It is surprising that I am up to Blog Number 339 and I have never written anything about Endometriosis. I apologise unreservedly to the 1 in 10 women who suffer with the persistent pain / fertility issues that Endo presents them with. In these COVID19 times, I have staff who have less patients and more time to sit down and collaborate to write some blogs and so together, Megan, Amanda and myself have compiled this blog on Endometriosis. It is so big that I am splitting it into a couple of blogs for your reading pleasure. We have used multiple sources for this information and these references are listed below.
Endo is something that women have suffered with in silence for generations. You will see that it often takes 6 to 10 years to diagnose it. I work in the area of persistent pain and yet it has taken me nine years to get around to writing this blog. (This is actually embarrassing now- it took me the same length of time to compile this blog as it takes for some poor young woman to get it diagnosed and get help). But hopefully this is starting to change. Funding is starting to emerge from the government and leaders in the area of persistent pain management such as Dr Susan Evans are bringing programmes into the schools alerting young girls that period pain is not normal and you need to seek treatment earlier rather than later to manage any pain.
Here we are now in these strange COVID19 days. You are reading this blog about endo pain.
You know you have it because of a recent (or past) diagnosis.
Or you are wondering if you have it because of what you are reading – your symptoms are fitting the description written in the blog.
Do you wait and continue to suffer pain month after month because it is difficult, if not impossible to see a specialist endo gynaecologist or pain specialist? Or do you decide to book a Telehealth appointment with a pelvic health physiotherapist to learn some pain science and start to master your pain?
Even if your physio cannot do an internal examination, I know she will listen to your pain story, tease out any stressors, educate you about persistent pain and give you coping strategies to assist any pain symptoms, to help the pain with intercourse or minimise your monthly period pain. David Butler and Lorimer Moseley, two leading Australian pain researchers, have written many books on the management of persistent pain (the Explain Pain series) and they tell us that the pain science evidence reveals that 1 in 4 persistent pain patients will get up to 50% improvement in their pain symptoms simply with good pain science education. (1)
So this first blog is setting the scene to help you understand endometriosis:
Endometriosis is a chronic, benign, oestrogen-dependent inflammatory disease which includes the presence and growth of dysfunctional endometrial-like glands and stroma often with reactive fibrosis and muscular metaplasia outside the uterus (2). It affects 1 in 10 Australian women, usually commencing in teenage years with symptoms becoming more noticeable with each menstrual period. The progression usually follows one of two paths:
- Women who have severe period pain and are otherwise completely well; for these women an operation to remove the endometriosis is usually helpful
- Women whose pain starts with their period but then progresses to occurring most days of the month. This can include pain in the vagina, bladder, bowel, pain with intercourse, bloating, or migraines. For this group, a laparoscopy to remove endometriosis is usually only part of the solution. Their pain is more complex. The good news is that you still can fully expect to achieve a life with less pain with the right mix of physiotherapy, lifestyle change, diet, medications and pain education
What is happening in the body for someone with endometriosis?
When you look at the current literature regarding the pathogenesis of endometriosis you can see that what causes it is still a matter of considerable research and debate. Stem cells, dysfunctional immune response, genetic predisposition and aberrant peritoneal environment may all be involved in the establishment and propagation of endometriotic lesions. (2) There is still considerable work to do with the understanding this disease.
Endometriosis lesions are found in the pelvis covering the side walls and on the surface of the uterus, ovaries, fallopian tubes, bowel, cervix, vagina, bladder and lining of the pelvis. These areas of endometrial-like tissue do not bleed like the endometrium but are full of nerves – it may be this that causes pain or the chemical substances that can irritate or scar the tissue around them.
The original and best established theory by John Sampson (retrograde menstruation) was that the menstrual bleeding which normally flows out of the vagina is shed to the abdominal cavity via the Fallopian tubes and as it couldn’t leave the body it formed lesions of endometriosis in the pelvis. Retrograde menstruation happens for many women who do not have endometriosis so this theory doesn’t fit with all cases. Several other theories have been suggested.
Brosens and Benagiano suggest that it starts with bleeding from the uterus of girls just after they are born that passes into the abdomen and remains there until puberty when they fire up.(3) Another theory – the coelomic metaplasia theory states that embryonic cells from the Müllerian ducts persist in ectopic locations. At puberty, stimulated by estrogens, they grow to build up endometriotic lesions. According to genetic scientist Nyholt endo is a heritable, hormone-dependent gynaecological disorder. What is known is that oestrogen is the driving force of endometrial proliferation which is why it commences with menstruation and usually subsides when women go through menopause.
Endometriosis lesions come in many colours, shapes and sizes when seen via laprascopy.
- Red lesions-contain many blood vessels and may be the first stage of endometrisis.
- Clear lesions look like tiny bubbles, early endo and difficult to see
- Black lesions – endometriosis irritates the peritoneum around it causing scarring. The black colour is due to trapped blood turning black
- White lesions occur when the scarring blocks bood vessels and leaves a thick white scar
- Endometriomas or chocolate cysts ar larger lumps of endometriosis that grow inside an ovary
- Peritoneal windows or pockets on laparoscopy look like oval dents in the surface (4)
In about 20% of women with endometriosis, it will inflitrate into pelvic structures (bowel, bladder, the vagina and uterosacral ligaments) – it is called deep infiltrating endometriosis (DIE). This form of the disease often causes more destruction of the normal anatomy and is generally significantly more difficult to remove and results in adhesions between organs.
There is also evidence that endometriosis has elements of central sensitization via persistent nociceptive (danger) input from endometriotic tissues resulting in increased responsiveness at the dorsal horn of the spinal cord which processes input from the affected areas (viscera and somatic tissues).(5). This is important when considering the treatment strategies that physiotherapists use in managing pain.
Although the condition affects a large percent of the female population, diagnosis and treatment can be difficult. In Australia, the average length of time between onset of symptoms and diagnosis is about six years, longer in other countries. This is largely due to the fact that endometriosis symptoms can also result from other conditions, therefore it can be difficult and time consuming determining the cause of someone’s symptoms.
How is it diagnosed?
More recently ultrasound (U/S) has a good sensitivity and specificity for endometriomas (83% and 89%, respectively) is able to show us a picture of different pelvic organs and is an increasingly important investigation as preparation for surgery for DIE. U/S can also be helpful to look for other conditions such as fibroids in the uterus or ovarian cysts that are unrelated to endometriosis, but may be causing other pelvic problems. High-resolution magnetic resonance imaging (MRI) with bladder, vaginal, and rectal contrast has been a breakthrough in recent times.
A laparoscopy is ‘keyhole’ surgery during which they look inside the abdomen for the presence of endometriosis and is usually required to show the full extent of the endo. This is gold standard in endometriosis diagnosis. It is recommended that you see a specialist endo surgeon for removal of lesions as this first clearance increases your chance of good results with future pain. However, there is only so much that surgery can do for pain, and having too many laparoscopies can actually worsen pain. Your doctor may explain that sometimes non-surgical treatments are a better option for your particular pain.
It is important to note that the degree of symptoms experienced by a patient does not reliably correspond with the degree of endometriosis found at laparoscopy. At times women with mild symptoms of endometriosis have been found to have a lot of lesions at the time of surgery, whereas other women with severe symptoms have a normal pelvis (no endometriosis present).
What are the symptoms?
Symptoms vary from woman to woman, with some showing no symptoms at all. Common symptoms include:
- Intermenstrual bleeding (bleeding between periods)
- Painful periods (Dysmenorrhea)
- Pain with intercourse (Dyspareunia)
- Painful defaecation (Dyschezia)
- It’s also common for women with endometriosis to have other conditions including Irritable Bowel Syndrome or Painful Bladder Syndrome
- Infertility – although most women with endometriosis do become pregnant, and you should definitely use contraception if you aren’t ready for a pregnancy
Period pain can be caused by endometriosis or by the uterus, or both. The uterus contracts to help shed the endometrial lining during a period. The body produces substances called prostaglandins that stimulate these contractions and also have an inflammatory effect. A higher concentration of these prostaglandins is linked to more severe pain.
Period pain can be quite severe in teenagers who do not have endometriosis. This pain usually occurs during the first one to two days of the period and is relieved by the oral contraceptive pill or period pain medication. On laparoscopy, the pelvis looks normal and this pain usually eases after having a baby.
Severe period pain in younger women is becoming a more significant problem. Two generations ago, our grandmothers were having their first baby at around 20 years of age and spending a lot of their younger years pregnant or breastfeeding. Now many women are delaying having children or choosing not to have children. This means that they are having more periods, and if they have endometriosis, more pain as endometriosis pain tends to worsen with each period.
Adapted from the Endometriosis Myths and Facts Endometriosis Australia: Created by Amanda Waldock
Click on the image to see a larger version of it
There are some factors that seem to increase the likelihood of developing endometriosis including:
- Family history of endometriosis
- Menstrual patterns – including menarche at an early age (first period), longer length of periods (>7days), shorter cycle (regularly less than 27 days between periods) and heavier periods
- Reproductive history – fewer or no children (as pregnancy and lactation reduce number of periods)
- Immune function – having autoimmune conditions like asthma, allergies, rheumatoid arthritis or multiple sclerosis
- Obstructive menstrual outflow – such as congenital abnormalities or a narrow cervix could increase retrograde menstruation
- Environmental toxins – research has found dioxins may imitate oestrogen or compromise the immune system and contribute to endometriosis
Endometriosis and other health conditions
Women with endometriosis are 2.5 times more likely to have irritable bowel symptoms, and there is also an association between endometriosis and bladder pain syndrome (BPS). It has also been found that women with endometriosis or dysmenorrhea (painful periods) can develop hyperalgesia (increased sensitivity), inflammation and overactivity in abdominal and pelvic floor muscles. There will be treatment strategies for IBS, reducing overactive muscles and managing BPS in the Treatment Blog coming soon.
The cross over effect of these conditions and symptoms explains how the pain can start in one tissue, organ or muscle and then spread throughout the pelvis. The cross over effect is caused by convergence. Nerve supply to the organs and muscles comes from the spinal cord and each segment of the spinal cord can supply several tissues. This means that nerves from several tissues converge into one segment or nerve root to travel together up the spinal cord. Simply put, convergence means that inflammation in one organ or structure can cause inflammation or hyperalgesia in other organs which are supplied by the same nerve root. (Known as viscero-visceral hyperalgesia). This same concept can be applied to the musculature: inflammation in an organ can cause hyperalgesia and overactivity in muscular structures supplied by the same nerve root.
Some good websites for endometriosis
Pelvic pain Foundation of Australia
NICE Guidelines for management of Endometriosis
Australian Government National Action Plan for Endometriosis
Queensland Endometriosis Support Group
If you want an excellent, comprehensive book to learn more about Endometriosis, I highly recommend Dr Susan Evans book Endometriosis and Pelvic Pain. I will be reviewing Susan’s book in a future blog. We sell it on our website – if you would like to purchase it then click here.
Part 2: The treatment options will come in the next couple of days.
If you want to BOOK AND APPOINTMENT TO GET HELP CLICK ON THIS LINK. Don’t delay any longer- seek help!
(1) Moseley and Butler (2017): Explain Pain Supercharged
(2) Lagana A et al (2019)The Pathogenesis of endometriosis: Molecular and cell biology insights. Int J Mol Sci
(3) Rolla E (20919) Endometriosis: Advances and controversies in classification, pathogenesis, diagnosis and treatment
(4) Evans. S and Bush. D (2016). Endometriosis and pelvic pain. Adelaide, South Australia. Dr Susan F Evans Pty Ltd.
(5) Zheng, P., Zhang, W., Leng, J., & Lang, J. (2019). Research on central sensitization of endometriosis-associated pain: a systematic review of the literature. Journal of pain research, 12, 1447–1456. https://doi.org/10.2147/JPR.S197667
Australian Government Department of Health (2018). National Action Plan for Endometriosis. Available at: https://www1.health.gov.au/internet/main/publishing.nsf/Content/58AD1EF08402AC9FCA2582D5001A271E/$File/National%20Action%20Plan%20for%20Endometriosis.pdf?fbclid=IwAR2xUcDfWUtHNTPnUw4snCEm3v3Bzt60byMsHOVJ1jMGMk1WU1VGG2oNthY
Endometriosis Australia. Endometriosis Research. Available at : https://www.endometriosisaustralia.org/research
Hallam, T (2020). WHTA – Advanced Pelvic Floor. Pelvic Pain Genitourinary and Anorectal Pain disorders.
Jean Hailes. Endometriosis. Available at: www.jeanhailes.org.au/health-a-z/endometriosis
National Institute for Health and Care Excellence. Endometriosis: Diagnosis and management NICE guideline [NG73] 2017. Available at: https://www.nice.org.uk/guidance/ng73?fbclid=IwAR0wJR31r-5VSH0ZKu2iOqVv8ZyffLitQxvhDZmaqY1e6aMjvaxPi215w5M
Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: Epidemiology, Diagnosis and Clinical Management. Current Obstetrics and Gynecology reports, 6(1), 34–41. https://doi.org/10.1007/s13669-017-0187-1
Pelvic Pain Foundation of Australia. 2019. Available at: www.pelvicpain.org.au
Women’s Health Queensland Wide Inc. Endometriosis Fact Sheet. Available at: https://womhealth.org.au/conditions-and-treatments/endometriosis-fact-sheet