What are the common symptoms of endometriosis? and why they happen?

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Dr. Steve Vasilev, MD, Gynecologist, Endometriosis Surgeon*:

Common endometriosis symptoms include those listed below.  Some overlap with the highly related condition called adenomyosis.  The reasons for how endometriosis and/or adenomyosis can contribute to each of these symptoms can shed light on what treatment(s) might be effective options.  Please keep in mind that non-endo causes for these symptoms may be in play as well. The following is oversimplified but may give you new insights into why you may have some of these symptoms and what you may be able to do about each of them. More importantly, by going through these and adding up the patterns or factors that are causing you the most problems it is possible to determine if surgical or medical therapies are your next best move.  

  • Painful periods (dysmenorrhea)

Your pelvis contains non-reproductive organs like the bladder and intestine, either of which can be a source of pain with or without endometriosis involvement. If the pain is worsened or is mainly present with periods then the most likely involved organ is the uterus, which is affected by either endometriosis or adenomyosis or both.  Cyclic release of multiple inflammatory factors activates nerve fiber growth, leads to cell damage, fibrosis and exacerbates pain during periods.  Which cells produce these factors and in what order is a main subject of current research.  However, the main point is that this release is largely cyclic and can be interrupted by anti-inflammatory medications like NSAIDs, by hormonal cycling interruption and surgical removal of endometriosis lesions that produce many of these signaling cytokines.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851862/ 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8226491/ 

  • Infertility

The connection between endometriosis and fertility seems obvious but the mechanisms are very complex and incompletely understood.  Usually infertility is multifactorial, including causes that are not related to endo.  Less appreciated is the connection with adenomyosis but it is real and probably based on distinctly separate mechanisms.  The overall mechanisms can be based on tubal blockage, local inflammation, uterine muscle dysfunction, local hormonal alterations and much more.  So it is not possible to say what treatment(s) might be best here other than to say that at least a proper diagnosis through surgery may help. Also, for some of the factors mentioned, surgery can be corrective.  

Diffuse adenomyosis (meaning that it is spread throughout the uterine muscle wall) cannot be surgically removed short of a hysterectomy and may or may not be influenced by hormonal therapies.  Isolated adenomyomas can sometimes be safely surgically removed if they are interfering with fertility, such as blocking the tubes.   

  • Diarrhea during menstrual periods

Diarrhea that cycles with your period is a common complaint and may be related to endometriosis growing directly on the rectal muscle or due to the inflammatory substances produced by endo cells. Local production of inflammatory molecules can lead to hyper-motility of the sigmoid and rectum muscles, which can manifest as cramping and diarrhea.  Anti-inflammatories and anti-spasmodic medications can help. Surgery can also help if there is direct muscle growth or even nearby endo lesions that are releasing these substances and that can be removed.     

  • Pain during intercourse (dyspareunia)

Endometriosis implants are hyperinnervated and can produce pain with pressure.  The act of intercourse can apply this pressure on the upper vaginal area and uterosacral ligaments, which are often involved by endo.  Once this pain is experienced and local inflammation further causes tension in the pelvic floor the muscles surrounding the vagina can contract, even in anticipation, which worsens the problem.  Pelvic floor therapy can help diagnose the problem and locate the area(s), as well as release some pelvic floor tension, but unless the inciting endo and hyperinnervated surrounding fibrotic tissue is removed surgically the problem is likely to persist.  A relatively recent meta-analysis of multiple research papers showed that dyspareunia can be significantly reduced by surgical excision.  This is a particular area where meticulous excision by an expert will likely lead to better results.  

Dyspareunia and quality of sex life after surgical excision of endometriosis: a systematic review – PubMed (nih.gov)

  • Heavy or abnormal menstrual flow

Books have been written on abnormal uterine bleeding, based on thousands of research articles. So, it is a very complex topic, similar to infertility and the two can overlap in causes and effects. Uterine bleeding can be ovulatory and anovulatory in nature and this distinction is based on whether or not your hormones are cycling properly or not, based on a very complex interaction of signals from your brain to your ovaries.   Endometriosis does not directly effect this process as a main cause but can influence bleeding indirectly anyway.  Whether it is by increasing stress from pain or damage to the ovaries which can change local hormonal function, removing endo can have a profound effect on normalizing bleeding cycles.  In addition, adenomyosis can affect uterine contractility, which can have a direct effect on uterine bleeding.  Because of the complex findings and interactions possible, surgery is not a cure-all but can help by providing the correct diagnosis, removal of the endo lesions and restoring normal anatomy as much as possible.     

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5779569/ 

  • Abdominal or pelvic pain after vaginal sex

Uterine and pelvic floor spasm as part of normal orgasm when these areas are already hypersensitive can lead to continued contractions and can lead to pain that lasts for a while.  Some of those pain signals can be transferred to the lower abdominal wall muscles as well.  In addition rectal fusion to the posterior vaginal wall will also cause more direct pain and inflammation by the vaginal area pulling on the rectal wall. Also, as you are probably recognizing, any event that stirs up the pelvis and causes some degree of trauma leads to increased molecular signaling which further amplifies the problem. 

Pelvic floor physical therapy can certainly help, as well as medical anti-inflammatory therapy.  But removal or the problem areas and restoration of normal anatomy as much as possible through surgical excision of endo and the related fibrosis should be strongly considered. 

  • Painful urination during or between menstrual periods (dysuria)

Assuming infection is ruled out, painful and frequent urination is an extremely common symptom of endometriosis.  The inflammatory molecular signals that are produced by endo cells and by responding inflammatory cells that aggregate in the area injury affect all pelvic organs, including the bladder.  There is background production of these and cyclic increases with menstrual periods, which leads to bladder wall spasm.  An associated condition called interstitial cystitis is commonly appreciated in endometriosis patients and can also be a factor.  Anti-inflammatories, anti-spasmodics that specifically target the bladder and hormonal regulation may help but a correct diagnosis is critical to avoid medication side effects. Assuming surgery identifies endo implants, surgical excision of these can also help.  During excision surgery a cystoscopy is often done to help narrow down the main cause by looking directly into the bladder.  In the worst case scenario, endo lesions are identified insider the bladder which can also cause cyclic bleeding from the bladder (hematuria). 

https://journals.sbmu.ac.ir/urolj/index.php/uj/article/view/2838

https://journals.sbmu.ac.ir/urolj/index.php/uj/article/view/2838/1051

  • Painful bowel movements during or between menstrual periods (dyschezia)

Endometriosis, in addition to being intensely inflammatory, causes fibrosis or scarring as your body attempts to heal itself.  This inflammation and fibrosis can severely alter the anatomy in the pelvis and distort the rectal course, essentially gluing it to the uterus, cervix and posterior vaginal wall.  This angulation can cause constipation and trouble evacuating stool, while the inflammatory signals are causing the rectal muscles to hyper-contract.  This leads to painful bowel movements which are made worse during cyclic increase in inflammatory molecules.  

Left unchecked, more fibrosis and inflammation causes a progressive vicious cycle and only gets worse with time.  In the worst-case scenario, over time, the endo will grow through the wall of the rectum causing cyclic rectal bleeding.  Only surgery to remove the area and lyse scars or adhesions and remove any fibrosis and active endo and possibly deep infiltrative endometriosis (DIE) will help here.  This is because anti-inflammatories and anti-spasmodics may help reduce symptoms but will not eliminate the causative endo or the fibrosis that is continually produced.  

  • Gastrointestinal problems, including bloating, diarrhea, constipation, and/or nausea

Generally, intestinal symptoms related to endometriosis can be direct or indirect or to related conditions like small intestinal bacterial overgrowth (SIBO).  Just the presence of endo inside the abdomen and pelvis, even if there are no direct implants on the bowel, can cause enough inflammation to irritate the intestine enough to cause symptoms.  In addition, endometriosis implants directly on the bowel can worsen the symptoms.  There is no way to tell which of these situations is in play without surgery.  Imaging may help if obvious areas are uncovered, but most of time this is not the case.  On the other hand, diagnosing SIBO requires only a simple breath test.  For this reason, it is prudent to test for SIBO first to see how much of your symptoms might be due to this before making decisions about surgery.

 

*This is not medical advice and is aimed for informational use only. Please contact the doctor’s office or consult with your doctor for any medical questions.

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