Understanding Endometriosis

Understanding Endometriosis 

The current situation and the role of Chinese Medicine for long-term treatment

By Maddy Lou (Acupuncturist and Chinese Medicine Herbalist)

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Endometriosis is a menstrual-related condition that affects 190 million people around the world (1). It’s estimated to be one of the main causes of period pain and is present in 30-50% of infertility cases (1). In this article, nationally registered Acupuncturist & Chinese Medical practitioner Maddy Lou discusses endometriosis, its treatment options and the current research around Chinese Medicine as a viable option alongside conventional treatment.

An Introduction

Endometriosis, AKA endo, is a growing concern, and it’s occurrence is steadily increasing in people with uteruses. As of 2018, endo affected 190 million people worldwide - although we expect that this number is much higher, as many endo cases remain undiagnosed. These folks have to cope with chronic pain, infertility and a decreased quality of life.

Despite its huge effect on people’s wellbeing, endo is not well understood. Although there have been recent campaigns such as Endo Awareness Month that have increased visibility of the disease, more awareness in both public and professional spheres is needed (2). The acknowledgement of this disease by the medical system has only happen recently, so there is some huge catching up to do in terms of adequate research. 

With lack of awareness, comes lack of information. We still can’t figure out the exact cause of endo, despite a growing body of research. Even diagnosing endo can be difficult, confusing and delayed. When it comes to treatment, the current standards are hormonal medications and/or surgery. These are both solid options, but unfortunately it’s not that simple. The medications can have an array of side effects that many find hard to tolerate. Surgery can help, but the rates of post-op recurrence is concerning. Some research suggests it can even worsen the condition.

Could there be a better way to diagnose and treat endo?

What is the current research saying?

Does Chinese Medicine have a role to play as a treatment option?

What is Endometriosis?

Before we dive deeper, let’s understand the basics…

The inner lining of the uterus is called the endometrium. It grows through the month and sheds - this is your period. Endometriosis is when tissue that looks and acts like this lining, goes a bit rogue. It starts growing outside the uterus, in places such as the pelvic cavity, ovaries, fallopian tubes, bowel and/or bladder. It can sometimes show up throughout the digestive tract and even the nasal cavity in rarer cases (2).

Why is this a problem? 

This rogue tissue reacts to hormones in the same way it would if it were still inside the uterus. It thickens and sheds like it would during menstruation, except then the blood can’t pass out of the vagina. Where does it go? It sticks around and irritates the affected areas, causing lots of inflammation and pain. Over time scarring and adhesions can begin to happen, meaning that the tissues start to stick to other structures surrounding it.

Symptoms

The two most common symptoms are:

1. Pelvic pain that is chronic, cyclical and persistent.
2. The passing of large blood clots during menstruation. 

But symptoms can be very different from person to person (2).

Other symptoms can include; pain during sex, digestion issues, constipation and painful urination (2). There is also a clear link between endo and infertility, because it can affect ovulation and cause inflammation in the abdomen area. In fact, the infertility rate is 20 times higher in endo patients (2). As well as debilitating pain, infertility is a major factor that drives patients to seek out help.   

Are there any known causes of Endometriosis?

The cause of endo isn’t well understood. Some people think that having sex or doing handstands during your period will cause a backflow of endometrial cells into the pelvis, something called “retrograde menstruation”, but there is no evidence to support this (4). The theory of retrograde menstruation says that menstrual blood and tissue could escape into the pelvic cavity through the fallopian tubes. So far this is only assumed as a possible associated risk (2). 

Other  potential factors that could explain what causes endo include:  

• Hormonal disorders or imbalances (2)
• Inflammatory or immune system disorders (2)
• Exposure to environmental toxins (4) 
• A family history of endo (4)

So far, there’s no substantial evidence to prove whether any of these theories have solid standing.  

The most important takeaways for folks with endometriosis are:

You didn’t cause your endometriosis.

The pain is not in your head. It’s real and you shouldn’t have to suffer.

How is Endometriosis diagnosed?

There are some big issues when it comes to diagnosing endo:

1. The symptoms are nonspecific.For example, even though pelvic pain and period pain are really common signs of endo, there are many other conditions that also show these symptoms (like uterine fibroids, pelvic inflammatory disease and irritable bowel syndrome, to name a few) - this often leads to misdiagnosis (7).
2. There are no accurate biomarkers (yet).This means you can’t get a blood or urine test to confirm whether or not you have endo. However, current research is testing the accuracy of blood-tests that measure levels of a protein called CA-125 (6). This protein is often elevated in endo patients, but more research is needed before it can become an indicator for diagnosis (6).
3. There’s a lack of awareness. There still isn’t enough current information surrounding the disorder. Not just in the general public, but in health care professions too (5).
4. There’s still a stigma. Openly discussing menstrual conditions is still stigmatised. Some patients don’t feel safe to talk about it and choose to remain silent (5). Symptoms like period pain and dyspareunia (pain during sex), are too often dismissed as “normal” or ignored altogether (5). 
5. Presentation varies greatly.For example, a patient might have large nodules with scarring that have been present for years, but have never shown any symptoms (like pain). On the other hand, a patient with much smaller and more surface lesions may experience intense and ongoing pain.  
6. It’s hard to track the progression.There’s no clear direction of disease progression. In studies of repeated surgeries, 29% of lesions progressed (got worse), 42% regressed (got better) and 29% stayed the same (5). 
   

Because of all these factors, the average delay between the onset of symptoms and diagnosis is 8 years (7). That means that on average, people are suffering for 8 years before they even know they have endo. 

The current gold-standard for diagnosis (and treatment) of endo is through surgery. That means that an official diagnosis is only made when a surgeon sees at least one of the following things growing around the uterus:

• Endometrial tissue
• Lesions (damaged or scarred tissues)
• Nodules (abnormal growths that look like little swellings)
• Cysts (larger sac-like growths that usually contain fluid)

The surgical procedure used to diagnose and treat Endo is called a laparoscopy. 

A laparoscopy is pretty invasive, so some people don’t opt for it and therefore don’t become formally diagnosed. This means there’s probably a much higher occurrence of endo than what’s reported.

Also, research suggests that surgery could be making the pain worse in some patients (15).  

There are 3 different types of pain associated with endo: 

• Nociceptive: the kind of pain associated with an injury (like a broken arm)
• Neuropathic: pain that comes from damaged nerve endings
• Central nervous system: when the CNS sends more pain signals to the brain than usual. 

Researchers have found that surgery only really helps with the first kind (nociceptive pain). Unfortunately, lots of endo sufferers experience neuropathic pain. During surgery, nerves can get damaged - this can make neuropathic pain worse. So whilst surgery may be the best tool for diagnosis, it may set some people back in terms of treatment. 

An estimated 6 out of 10 endo cases are undiagnosed (7). Having a large number of undiagnosed cases means that symptoms remain ongoing for those people, and cause more negative impacts on their wellbeing. For many people with endo, the journey to diagnosis is long, delayed and filled with barriers. 

After going through the long and grueling process of diagnosis and surgery, a whopping 50% of patients will experience a post-op recurrence of endo (7).

What are the current Treatment options?

At a glance

1. Surgery– which comes with side-effects and a high chance of relapse, as discussed above.
2. Pain relief medication- which only work for some people, or 
3. Hormone therapy- which can reduce the post-op recurrence rate, but causes menopausal symptoms which are hard for patients to tolerate. 

The details

If a diagnosis is made, the treatment protocol is hormonal or pain-relief medication and/or surgery. Although these are considered the best treatment options available, their effectiveness is inconsistent and side effects are common. 

The oral contraceptive pill (commonly known as “the pill”) is often the first line of hormonal treatment for endo-associated pain (4). Other medications which suppress oestrogen levels in the body are commonly prescribed, however these can have menopause-like side effects, including hot flushes, vaginal dryness and bone density loss (2). Other pain-relief medications such as non-steroidal anti-inflammatory drugs (NSAIDs) are sometimes used, but not all patients respond to this kind of medication (2). Some doctors may prescribe opioids, but these can be unsafe for chronic pain due to their addictive nature and potential side effects with long-term use (2).

If a patient doesn’t find any relief from pain using medication, surgical treatment (laparoscopy) is considered to remove the tissue/adhesions. 

But laparoscopy has been shown to decrease pain in only some patients, and may even make things worse. 

A hysterectomy (the surgical removal of the entire uterus and possible removal of the ovaries and fallopian tubes) is also a very common treatment option, in fact:

Endo-associated pain is the leading indication for hysterectomy in patients aged 30-34 years (2). 

🌀

People with endometriosis need better treatment options.

Is a more functional and holistic approach needed?

Can Chinese Medicine provide help for more long-term treatment? 

What does the research say about Endometriosis and Chinese Medicine?

If endo is a chronic disease, that means it requires long-term, or even lifelong management. So we want treatment to be safe, have a low rate of negative reactions, and have as little unwanted side-effects as possible.  

Chinese Medicine typically uses the combination of acupuncture and herbal medicine to help treat the root cause of disease. It has a low rate of adverse reactions or unwanted side effects (8). It’s safe to use, especially over long periods (8). Chinese Medicine focuses on preventative treatment, and analyses diet, lifestyle and psychological factors. It looks at the whole picture, not just the symptoms. 

At a glance, the current research shows Chinese Medicine may help with:

1. Relieving period/pelvic pain.
2. Increasing pregnancy rates and shortening time to conception.
3. Reducing the post-op relapse of endo with low adverse reaction rates.
4. Improving quality of life.
   

The Details

Chinese herbal medicine  may help prevent the post-operative recurrence of endo with a low rate of adverse reactions.

In 2018, a randomised-controlled-trial was carried out with 208 endo patients after they had gone through surgery (9). The purpose of the trial was to look at the post-op recurrence rate of endo, by comparing two different treatment groups. One group was given a commonly prescribed hormone medication (Gonadotropin releasing hormone analogue). The other group was given a Chinese herbal formula (9). Results showed that the rate of recurrence reduced in both treatment groups. However, patients who were given the herbal medicine  had significantly less relapse of the disease (9). This group also had a much lower rate of adverse reactions (9). The group who got given hormonal medication experienced more side effects like amenorrhea (some of their periods stopped)(9). 

Chinese Medicine can improve postoperative quality of life for endo patients

A 2013 study examined 320 patients with endo by placing them into two different treatment groups post-surgery (10). One group received hormonal medications (gonadotropin-releasing hormone agonist or gestrinone treatment). The other group received one of the following Chinese Herbal Formulas based on their pattern of symptoms; Gui Fu decoction, Dan Chi decoction, Qi Dan Decoction or Zi Yin Decoction. 

When comparing the quality of life for both groups following treatment, the Chinese Medicine group scored significantly higher in physical health, mobility, activities of daily living and sexual activity (10).   

Chinese Medicine may help reduce post-op recurrence  

Another study in 2013 showed treatment with Chinese herbal medicines prevented the recurrence of endometriosis after an operation, improved pregnancy rates and showed fewer and lighter adverse reactions than treatment with hormonal medication (11). In this study, the patients in the CM group were treated using three types of Chinese herbal medicine, and patients in the WM group were given hormonal medication (11). 

Chinese Medicine can help reduce period pain 

A randomised controlled trial in 2020 examined the effectiveness and safety of a Chinese Medicine herbal formula in treating primary dysmenorrhea (period pain) (12). Pharmacological studies showed that this formula is able to reduce spasmodic contractions of the uterus (the mechanism which typically causes period pain). In this study, the results clearly showed that the Chinese Medicine herbal formula remarkably reduced the severity of menstrual pain (12).

Another study from 2018 analysed in detail the role of a Chinese herbal formula used widely by practitioners to help treat pelvic pain and pelvic masses. It was found to have a sedative and anti-inflammatory effects on endometriosis-related symptoms (13).

Chinese Medicine may help shorten the time to conception and increase pregnancy rates.

A study in 2020 conducted clinical trials on 202 patients with endo-associated infertility - it explored the safety and ability of two Chinese Herbal Medicine formulas (Huo Xue Xiao Yi Granules & Bu shen Zhuyun Granules) to improve pregnancy following a laparoscopy (14). Patients were placed in the Chinese Herbal Medicine treatment group or a placebo treatment group. Pregnancy and live birth rates were significantly higher in the Chinese Medicine group as compared to the placebo group (44.6% vs 29.7%). Follicle development and ovulation promotion was also significantly higher in the Chinese Medicine group (14). 

There is a need for further study with larger population groups, but the research around the efficacy of Chinese Medicine is ever increasing. So far the results are very promising. A small, but growing body of evidence suggests that for some people, acupuncture and Chinese herbal medicine may reduce post-op relapse of endo and the symptoms of pelvic pain, have a positive impact on pregnancy, shorten time to conception and improve quality of life. Chinese Medicine practitioners look at everyone differently, and the goal is to always understand you and the unique set of patterns and symptoms that make up your experience.

If you feel like Chinese Medicine might be helpful for you, always ensure to see a qualified and nationally registered practitioner.

A Reference List for further research

1. World Health Organisation (2021). Retrieved from: https://www.who.int/news-room/fact-sheets/detail/endometriosis
   
   
   
2. Zondervan, K. T., Becker, C. M., & Missmer, S. A. (2020). Endometriosis.The New England Journal of Medicine, 382(13), 1244–1256. 
   Doi: https://doi.org/10.1056/NEJMra1810764
   
   
   
3. Marchment, R. (2020).Gynaecology Revisited: Obstetrics and gynaecology for practitioners of Chinese Medicine (Revised and updated). Ji Sheng Chinese Herbs.
   
   
   
4. Ashrafi, M., Sadatmahalleh, S. J., Akhoond, M. R., & Talebi, M. (2016). Evaluation of Risk Factors Associated with Endometriosis in Infertile Women.International Journal of Fertility & Sterility, 10(1), 11–21. https://doi.org/10.22074/ijfs.2016.4763
   
   
   
5. Evers, J.L.H. (2013). Is adolescent endometriosis a progressive disease that needs to be diagnosed and treated?Human Reproduction, 28(8), 2023. 
   Doi: https://doi.org/10.1093/humrep/det298
   
   
6. Rokhgireh, S., Mehdizadeh, A., Chaichian, S., Delbandi, A., Mahin, L., Khodaverdi, S. & Alkatout, I. (2020). The Diagnostic Accuracy of Combined Enolase/Cr, CA125, and CA19-9 in the Detection of Endometriosis,BioMed Research International 2020(9). Doi: https://doi.org/10.1155/2020/5208279
   
   
   
7. Agarwal, S. K., Chapron, C., Giudice, L. C., Laufer, M. R., Leyland, N., Missmer, S. A. & Taylor, H. S. (2019). Clinical diagnosis of endometriosis: a call to action.American Journal of Obstetrics and Gynecology, 220(4). 
   Doi: https://doi.org/10.1016/j.ajog.2018.12.039
   
   
   
8. Zhao, R., Sun, W., Liu, Y., & Dai, Z. (2020). Chinese Medicine in Management of Chronic Disease Endometriosis.Chinese Journal of Integrative Medicine, 26(2), 88-91.
   
   
   
9. Li T.T., Sun W.W., Zhao R.H. (2018) Clinical observation on the treatment with Huoxue Xiaoyi Fang for ovarian endometriosis with syndrome of qi stagnation and blood stasis.Modern Journal of Integrative Traditional Western Medicine (China) 27, 484-487.
   
   
   
10. Zhao RH, Liu Y, Tan Y, Hao ZP, Meng QW, Wang R. (2013) Chinese medicine improves postoperative quality of life in endometriosis patients: a randomized controlled trial.Chinese Journal of Integrative Medicine, 19, 15-21.
    
    
    
11. Zhao RH, Hao ZP, Zhang Y, Lian FM, Sun WW, Liu Y. (2013). Controlling the recurrence of pelvic endometriosis after a conservative operation: comparison between Chinese herbal medicine and Western medicine.Chinese Journal of Integrative Medicine, 19,820-825.
    
    
    
12. Chai, C., Hong, F., Yan, Y., Yang, L., Zong, H., Wang, C. & Yu, B. (2020). Effect of traditional Chinese medicine formula Ge Gen decoction on primary dysmenorrhea: a randomized controlled trial study.Journal of Ethnopharmacology,261, 113053.
    
    
    
13. Zhou, J., Ding, Z., & Hardiman, P. J. (2018). Understanding the role of gui-zhi-fu-ling-capsules (chinese medicine) for treatment of endometriosis in the rat model: Using NMR based metabolomics.Evidence - Based Complementary and Alternative Medicine, 2018, 9.
    doi: http://dx.doi.org.ezproxy.laureate.net.au/10.1155/2018/9864963
    
    
    
14. Zhao, R., Liu, Y., Lu, D., Wu, Y., Wang, X., Li, W. & Shi, G. (2020). Chinese Medicine Sequential Therapy Improves Pregnancy Outcomes after Surgery for Endometriosis-Associated Infertility: A Multicenter Randomized Double-blind Placebo Parallel Controlled Clinical Trial.Chinese Journal of Integrative Medicine, 26(2), 92–99. doi: 10.1007/s11655-019-3208-2
    
    
    
15. https://www.theguardian.com/australia-news/2021/jul/02/a-common-treatment-for-endometriosis-could-actually-be-making-things-worse