Why Is Endometriosis So Painful (and what can we do about it)?
When you think of endometriosis, what do you think of? If you have any experience with this disease, personally or professionally, the first word that may come to mind is “pain”. Caveot: not everyone with endo has pain. Some people only find out they have endometriosis when they are trying to conceive and have infertility. However, the most common symptoms of endometriosis are painful periods, chronic pelvic pain, bladder pain, painful intercourse, bowel pain, GI dysfunction, fatigue, heavy periods, and infertility.
But why is endometrios so painful? In this blog, we’re going to cover:
What is endometriosis (quickie review)
Where is endometriosis located (where does it like to live)
Causes of pain in endometriosis
Strategies for managing general chronic and endometriosis-specific pain
What is endometriosis?
Endometriosis is a disease in which endometrial-like tissue that resembles, but is not the same as, the endometrium (uterine lining) grows outside of the uterus, commonly within the pelvic and abdominal cavity
It is a multifactorial disease: it involves multiple systems in the body
A disease that is influenced by hormones (estrogen and progesterone)
Involves immune dysregulation
It is an inflammatory disease, causing adhesions and scar tissue
Endometriosis affects 1 in 10 women and the average length of time that it takes to get a diagnosis is 8-12 years.
Where is endometriosis located?
Endometriosis has been found in every organ in the body (brain, lungs, eyes, etc.) except the spleen. It is most commonly found in the pelvis and abdomen:
Areas of the pelvic and abdominal cavity (pic of side pelvic cavity with peritoneum illustration)
Pelvic cavity: side walls, peritoneum, uterosacral ligaments, rectovaginal septum, rectouterine pouch (aka Pouch of Douglas)
Pelvic Organs: bowel, bladder, intestines, rectum, appendix, ovaries, fallopian tubes, ureters, uterus, cervix, and vagina
Extrapelvic areas: upper abdomen, diaphragm, abdominal wall, and thorax
Why is endometriosis so painful?
I will admit, this part can be complicated (at least for me it is!) - here we go!
Nociceptive Pain: a type of pain caused by damage to body tissue. It can feel sharp, aching, or throbbing and it’s what you feel when you fall and hit your knee or cut yourself with a knife.
Nociceptive pain in endometriosis starts at the location of the endometriosis tissue/ lesion. Endometriosis lesions on an organ release chemicals that cause inflammation and irritate surrounding nerves. Additionally, endo lesions can attach to pelvic nerves and other structures, causing pain. When organs are fused together, or fused with neighboring structures, this can be painful.
Here’s one example of this: a patient of mine had significant pelvic pain and during her excision surgery, they found her right ovary stuck on the inside of her abdominal wall and her left ovary pulled behind her uterus due to endometriosis fibrosis.
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Once the endometrial lesion area becomes inflamed and irritated, peripheral sensitization can occur. This just means that the area is now hypersensitive to pain signals - they’re primed and ready to go and it won’t take much to kick them up!
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This leads to something called neuroplastic pain (central sensitization) in which the brain and spinal cord become more efficient at detecting pain. It also means that sensations that shouldn’t give a signal of pain, such as normal organ movement or pressure, now can cause pain.
At the level of the brain and spinal cord, there is also a phenomenon of “cross-talk” that can occur. This means that when different organs share a common nerve pathway to/from the spinal cord, there is potential for cross-organ hypersensitivity. In other words, endo lesions on one organ can cause symptoms in another when their nerve signals get crossed over in the spinal cord.
This can also happen from an organ to the body or the body to an organ. For example, a heart attack (organ) can cause arm pain (body) and people who have bladder pain (organ) can have pain in their pelvic floor (body).
Because of this brain re-wiring, the nervous system can also become more sensitive to other stimuli, such as stress, anxiety, illness, change in hormones, lack of sleep, etc., which can increase and perpetuate the pain.
Neuroplastic pain can explain why, for some people, even after having an endometriosis excision surgery, pain persists. While getting care from an experienced specialist is crucial, it’s not the only thing that most people need to do to manage their pain.
But its not all doom and gloom! The brain’s neuroplasticity, its ability to adapt and change, can also work to our advantage when it comes to pain management. Here are some general and some endometriosis-specific ways to improve neuroplastic pain by calming the nervous system.
Strategies for Pain Management
Education: gaining an understanding how pain works in the brain can reduce fear. One great book to check out: Why Pelvic Pain Hurts: Neuroscience Education for Patients with Pelvic Pain by Adriaan Louw, Sandra Hilton, and Carolyn Vandyken
Pelvic floor physical therapy: manual therapy, visceral mobilization, exercise, education, screening for central sensitization, nervous system calming strategies
Other body work: acupuncture, Mayan abdominal massage, lymphatic massage
Exercise: walking, yoga, strengthening training etc. Ideally, it should be something that is consistent, enjoyable, gets blood flowing, and isn’t over-taxing. This can help decrease pain, improve sleep, manage stress, improve mood, etc.
Nervous system calming strategies: breathing exercises, mindfulness/gratitude, practicing compassion, meditation, bilateral stimulation music, guided help apps (Curable, Headspace, etc.), red light therapy, the tapping solution, Qigong, and connecting with nature
Support groups: Nancy’s Nook for Endometriosis Care, Endo Warriors, local social media groups
Quality nutrition/diet: may benefit from avoiding stimulants and/or sugar
Reduce exposure to endocrine-disrupting chemicals: PCBs, dioxins, PFAS, Atrazine, DDT, Chlorpyrifos, BPA, Phthalates, Parabens, Triclosan, Lead, Mercury, Cadmium, etc.
Comfort measures: Epsom salt bath with lavender, heating pads, TENS unit
Mental health therapy: CBT (cognitive behavioral therapy)
Good sleep hygiene
Strategies for painful bladder, bowel, and sex
1) Pelvic floor physical therapy
2) Working with functional medicine or a registered dietician to determine any food sensitivities/irritants and improve bowel function through dietary changes and supplements to better support the system
3) Sexual Activity:
Initial penetration: pelvic floor physical therapy, quality lubricant, dilators
Deep thrusting: trying different positions (sidelying may be best due to less depth) or use an Ohnut to limit depth of penetration
Sexual medicine specialist for medical treatment of vulvar hormonal imbalance, vestibulodynia, etc. (ISSWSH)
Working with a mental health therapist who specializes in sexual health
Book: Hello Down There: A guide to Healing Chronic Pelvic and Sexual Pain by Alexandra Milspaw, PhD, MEd
In conclusion, the pain associated with endometriosis stems from multiple factors, including inflammation, nerve involvement, and neural plasticity (central sensitization). A comprehensive approach to pain management can significantly improve the quality of life of people with endometriosis. Understanding how pain works in the body and exploring strategies that target the nervous system can empower those with endometriosis to better manage their symptoms. With continued research, advocacy, and education, we can work toward improved treatment options and greater awareness of this often-misunderstood disease.
Have you been diagnosed with endometriosis or suspect you have it and want to work with pelvic floor PT with experience in this area? If you live in the greater Minneapolis, Minnesota area, my clinic is in Edina, MN - let’s work together! Contact me to learn more.
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Disclaimer: The information in this blog post is for general purposes only and is not intended to be used as medical advice, diagnosis, or treatment. Refer to your medical provider for all questions and concerns regarding your individual care.
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