Symptoms- from typical to atypical
Endometriosis symptoms can vary widely in both presentation and severity. While endometriosis can present with “typical” symptoms such as chronic pelvic pain during menstruation, it can also present with symptoms not readily attributed to endometriosis. One example is sciatica type symptoms- pain running along the lines of the sciatic nerve (from the low back down the back of the leg). For some, infertility rather than pain is the first sign that they note.
Pelvic Endometriosis:
The following study performed a literature review on pelvic endometriosis in order to identify signs and symptoms (hoping to lead to more timely investigation into the possibility of endometriosis).
Riazi, H., Tehranian, N., Ziaei, S., Mohammadi, E., Hajizadeh, E., & Montazeri, A. (2015). Clinical diagnosis of pelvic endometriosis: a scoping review. BMC women’s health, 15(1), 39. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4450847/pdf/12905_2015_Article_196.pdf
- Pain:
- Pain with periods (dysmenorrhea)- during and at the end of menstruation
- Pelvic pain before and during menstruation
- Pain during sexual intercourse or after sex (dyspareunia)
- Lower abdominal pain or suprapubic pain
- Lower back pain and loin pain
- Chronic pelvic pain (lasting ≥6 months)
- Pain between periods (intermenstrual pain)
- Ovulation pain
- Rectal pain (throbbing, dull or sharp, exacerbated by physical activity)
- Pain often worsened over time and changed in character
- Menstrual symptoms:
- Heavy or prolonged periods (hypermenorrhea or menorrhagia)
- Premenstrual spotting for 2–4 days
- Mid cycle bleeding
- Irregular bleeding
- Irregular periods
- Urinary problems:
- Pain with urination (dysuria)
- Blood in urine (hematuria)
- Urinary frequency
- Urinary tract infection
- Inflammation of the bladder (cystitis)
- Digestive symptoms:
- Abdominal bloating
- Diarrhea with period
- Painful bowel movements
- Painful defecation (dyschezia) during periods
- Blood in stool (hematochezia)
- Nausea and stomach upset around periods
- Constipation
- Irritable bowel syndrome (IBS)
- Early satiety
- Gynecologic comorbidities:
- Gynecological infections and low resistance to infection
- Candidiasis
- Infertility
- Pelvic inflammatory disease
- Ovarian cysts
- Bleeding after sex (postcoital bleeding)
- Comorbidities:
- wide range of allergies and allergic disease
- dizziness
- migraines and headaches at the time of period or before
- mitral valve prolapse
- Social life symptoms:
- Inability to carry on normal activities including work or school
- Depressed and anxious feelings
- Irritability or premenstrual tension syndrome
- Psychoemotional distress
- Musculoskeletal symptoms:
- muscle/bone pain
- joint pain
- leg pain
- Other symptoms:
- Chronic fatigue, exhaustion, low energy
- Low-grade fever
- Burning or hypersensitivity- suggestive of a neuropathic component
- Mictalgia (pain with urination)
Some signs of endometriosis in other places/specific places might include:
- Bowel:
- Abdominal pain
- Disordered defecation (dyschezia)
- Having to strain harder to have a bowel movement or having cramp like pain in the rectum (tenesmus)
- Bloating, abdominal discomfort (meteorism)
- Constipation
- Diarrhea
- Alternating constipation/diarrhea
- Painful defecation
- Dark feces containing blood (melena) or fresh blood with bowel movements (hematochezia) (Charatsi et al., 2018)
- “The gastrointestinal tract is the most common location of extrapelvic endometriosis (and extragenital pelvic endometriosis when referring to rectum, sigmoid, and bladder)… Symptoms, in general, include crampy abdominal pain, dyschezia, tenesmus, meteorism, constipation, melena, diarrhea, vomiting, hematochezia, pain on defecation, and after meals. The traditional cyclical pattern of symptomatology has not been confirmed by recent studies which postulate a rather noncyclical chronic pelvic pain as a more persistent symptom [32]. Cyclical symptoms that aggravate during menses, however, have also been reported in a small number of patients [33, 34]. Since intestinal mucosa is rarely affected, rectal bleeding is also an unusual symptom, reported in 0 to 15% to 30% of patients [15, 35, 36]. Bleeding can also occur due to severe bowel obstruction and ischemia [32, 37]. Acute bowel obstruction due to stenosis is a scarce complication reported only in cases when severe small bowel involvement is present or in the presence of dense pelvic adhesions.” (Charatsi et al., 2018)
- Bladder and Ureters:
- “feeling the need to urinate urgently,
- frequent urination,
- pain when the bladder is full,
- burning or painful sensations when passing urine,
- blood in the urine,
- pelvic pain,
- lower back pain (on one side)” (Medical News Today, 2018)
- None (if endometriosis is close to the ureters there may be no presenting symptoms)
- “Vesical endometriosis is usually presented with suprapubic and back pain or with irritative voiding symptoms [96]. These symptoms generally occur on a cyclic basis and are exaggerated during menstruation. Less than 20% of patients however report cyclical menstrual hematuria, which is considered a pathognomic sign for bladder endometriosis [97–99]. Bladder detrusor endometriosis symptoms may cause symptoms similar to painful bladder syndrome; therefore, diagnosis of bladder endometriosis should be considered in patients with recurrent dysuria and suprapubic pain [100]. Clinical symptoms of ureteral endometriosis are often silent [76, 101, 102]. Since the extrinsic form of the disease is more common resulting from endometriosis affecting the rectovaginal septum or uterosacral ligaments and surrounding tissues, patients present with dyspareunia, dysmenorrhea, and pelvic pain [103]. Abdominal pain is the predominant symptom, occurring in 45% of symptomatic patients [93, 104–106]. Symptoms are often cyclical when the ureter is involved, and cyclic microscopic hematuria is a hallmark of intrinsic ureteral disease [95, 107, 108]. There is a limited correlation between severity of symptoms and the degree of obstruction of the ureter. High degree of obstruction may proceed for a long time without symptoms, leading to deterioration of renal function [76]. Unfortunately, ureteral endometriosis is often asymptomatic leading to silent obstructive uropathy and renal failure [109].” (Charatsi et al., 2018)
- Thoracic (Diaphragm and Lung):
- “…many patients being asymptomatic. Symptomatic patients often experience a constellation of temporal symptoms and radiologic findings with menstruation, including catamenial pneumothorax (80%), catamenial hemothorax (14%), catamenial hemoptysis (5%), and, rarely, pulmonary nodules.However, symptoms have been reported before menstruation, during the periovulatory period, and following intercourse.Symptoms of thoracic endometriosis are largely related to the anatomic location of the lesions. Pleural TES typically presents with symptoms of catamenial pneumothorax and chest or shoulder pain. Catamenial pneumothorax is defined as recurrent pneumothorax occurring within 72 h of the onset of menstruation. The symptoms experienced by patients are comparable to those of spontaneous pneumothorax and include pleuritic chest pain, cough, and shortness of breath. Furthermore, diaphragmatic irritation may produce referred pain to the periscapular region or radiation to the neck (most often right-sided). The right hemithorax is involved in up to 92% of cases, with 5% of cases involving the left hemithorax and 3% experiencing bilateral involvement. Catamenial hemothorax is a less common manifestation of pleural TES. Similar to catamenial pneumothorax, it presents with nonspecific symptoms of cough, shortness of breath, and pleuritic chest pain. It is predominantly right-sided, although rare cases of left-sided hemothorax have been reported.Less common bronchopulmonary TES presents as mild to moderate catamenial hemoptysis or as rare lung nodules identified on imaging. Massive, life-threatening hemoptysis is rare. Pulmonary nodules can be an incidental finding at the time of imaging or can occur in symptomatic patients. They can vary in size from 0.5 to 3 cm. Outside of the well-established clinical manifestations of TES, cases of isolated diaphragmatic endometriosis are typically asymptomatic but can result in irritation of the phrenic nerve. This can produce a syndrome of only catamenial pain, presenting as cyclic neck, shoulder, right upper quadrant, or epigastric pain.” (Nezhat et al., 2019)
(catamenial refers to menstruation; pneumothorax is air leaking into the space between the lung lining; hemothorax is blood leaking into the space between the lung lining; hemoptysis is coughing up blood)
- Sciatic: pain in the buttock or hip area; pain, numbness, and/or weakness going down the leg; symptoms may initially occur with ovulation or menses (Sarr et al., 2018)
- Scar: “Symptoms at presentation included the presence of a palpable mass at the level of the scar (78.57%), non-cyclic and cyclic abdominal pain (50%, 42.85% respectively), bleeding form mass (7.14%) and swelling of the affected area (7.14%).” (Malutan et al., 2017)
This qualitative study describes symptoms as experienced by individuals with endometriosis:
- Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of endometriosis on women’s lives: a qualitative study. BMC women’s health, 14(1), 123. Retrieved from https://link.springer.com/article/10.1186/1472-6874-14-123
“All women had suffered severe and progressive pain during menstrual and non-menstrual phases in different areas such as the lower abdomen, bowel, bladder, lower back and legs that significantly affected their lives. Other symptoms were fatigue, tiredness, bloating, bladder urgency, bowel symptoms (diarrhoea), bladder symptoms and sleep disturbances due to pain….
“The women described the pain as ‘sharp’, ‘stabbing’, ‘horrendous’, ‘tearing’, ‘debilitating’ and ‘breath-catching’. Severe pain was accompanied by vomiting and nausea and was made worse by moving or going to the toilet. The frequency of pain differed between the women with some reporting pain every day, some lasting for three weeks out of each menstrual cycle, and another for one year…
“Most of the women complained of dyspareunia during and/or after sex….
“Heavy and/or irregular bleeding was another symptom experienced but in some women, it was a side effect of endometriosis treatment. Bleeding when exercising and after sex were experienced by only a few women. Women and their partners were particularly worried when bleeding occurred after sex….
“Most women reported that endometriosis had significant impacts as they lived through it every day of their lives…. The physical impact was associated with symptoms, treatment side-effects and changes in physical appearance. Pain in particular was reported to limit their normal daily physical activity like, walking and exercise. Women who had small children mentioned that they were not able to care for them as they would like…Fatigue and limited energy were also among reported physical impacts of endometriosis. Although infertility was primarily a physical impact of endometriosis, it had a negative impact on the psychological health, relationship, and financial status of the women….
“Most women reported a reduction in social activity, and opted to stay home, and missed events because of severe symptoms especially pain, bleeding and fatigue. They resorted to using up their annual leave after exhausting their sick leave because of their disease. Some women also decreased their sport or leisure activities and some gave up their routine sport including water ski, horse-riding, swimming and snow skiing….”
References
Charatsi, D., Koukoura, O., Ntavela, I. G., Chintziou, F., Gkorila, G., Tsagkoulis, M., … & Daponte, A. (2018). Gastrointestinal and urinary tract endometriosis: a review on the commonest locations of extrapelvic endometriosis. Advances in medicine, 2018. Retrieved from https://www.hindawi.com/journals/amed/2018/3461209/
Malutan, A. M., Simon, I., Ciortea, R., Mocan-Hognogi, R. F., Dudea, M., & Mihu, D. (2017). Surgical scar endometriosis: a series of 14 patients and brief review of literature. Clujul Medical, 90(4), 411. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683831/
Medical News Today. (2018). Can endometriosis cause bladder pain?. Retrieved from https://www.medicalnewstoday.com/articles/321439
Nezhat, C., Lindheim, S. R., Backhus, L., Vu, M., Vang, N., Nezhat, A., & Nezhat, C. (2019). Thoracic endometriosis syndrome: a review of diagnosis and management. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 23(3). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684338/
Saar, T. D., Pacquée, S., Conrad, D. H., Sarofim, M., De Rosnay, P., Rosen, D., … & Chou, D. (2018). Endometriosis involving the sciatic nerve: a case report of isolated endometriosis of the sciatic nerve and review of the literature. Gynecology and minimally invasive therapy, 7(2), 81. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6113996/
Labwork and Blood Tests for Endometriosis
While several companies are working to develop one, there is no single blood test that can definitively diagnose endometriosis yet. It takes a long time to determine if a test has the reliability “so that no patients with actual endometriosis would be missed and no women without endometriosis would be selected for potentially unnecessary additional procedures” (Signorile & Baldi, 2018). Fassbender et al. (2015) notes that such tests might help receive a diagnosis more quickly so that “no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis associated pain and/or infertility”.
In our Diagnosis section, you can read more about some of the types of blood tests that are under investigation. Other blood tests can be used to rule out other problems and can give an indication to investigate further but are not specific to endometriosis (such as CRP and CA-125). You can also find information in the Diagnosis section about the use of ultrasounds and magnetic resonance imaging (MRI’s) in endometriosis.
“The gold standard for the diagnosis of peritoneal endometriosis has been visual inspection by laparoscopy followed by histological confirmation [7].However, the invasive nature of surgery, coupled with the lack of a laboratory biomarker for the disease, results in a mean latency of 7–11 years from onset of symptoms to definitive diagnosis. Unfortunately, the delay in diagnosis may have significant consequences in terms of disease progression. The discovery of a sufficiently sensitive and specific biomarker for the nonsurgical detection of endometriosis promises earlier diagnosis and prevention of deleterious sequelae and represents a clear research priority….The most important goal of the test is that no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis-associated pain and/or infertility [17–19].”
(Fassbender et al., 2015, para. 1, 5)
Before and after surgery- tips on preparing
We get a lot of questions about what to expect before and after surgery. On our Resources page, we have added a section on Preparing for Surgery- Pre and Post-Operative.
In the Before Surgery section, you’ll find links to topics such as:
In the After Surgery section, you’ll find topics such as:
- What to Expect in the Weeks After Skilled Excision Surgery
- Managing Expectations Pre- and Post- Op
- Pelvic Therapy Resources
Another often asked question is whether your endo is “coming back” or persisting after surgery. This is a complicated question, but this might help:
Check out the Resources page for more information!
Migraines- overlap of common conditions or close tie to endo?
Both migraines and endometriosis affect a high percentage of the population. Endometriosis affects about 10-15% of the population, while migraines affect >12% of the population (Parasar, Ozcan, & Terry, 2017; Yeh, Blizzard, & Taylor, 2018). So is any association between the two just an overlap of two common conditions? Or is there something that ties the two together?
According to several studies, there is a higher prevalence of migraines in people with endometriosis. One study noted that “the risk of endometriosis was significantly higher in migrainous women” and that “women of reproductive age who suffer from migraine should be screened for endometriosis criteria” (Maitrot-Mantelet et al., 2020). Another study noted a “linear relationship exists between migraine pain severity and the odds of endometriosis” (Miller et al., 2018). One study also attempted to account for the effects of hormones on migraines and endometriosis and found evidence of a “co-morbid relationship between migraine and endometriosis, even after adjusting for the possible effects of female hormone therapies on migraine attacks” (Yang et al., 2012).
Curious about other related conditions? Check out Related Conditions
Bowel Endometriosis Surgical Management
While many individuals have bowel/gastrointestinal symptoms with endometriosis (like diarrhea, constipation, bloating, and pain with defecation), most will not have endometriosis directly on the bowel itself. (See more on bowel endometriosis here). For those that do, there are different approaches to its surgical management.
The different approaches might include shaving, excision, and resection. Studies reveal the advantages and disadvantages of the different techniques- you can read some of those studies here. Most experts express using a team approach (such as involving a colorectal surgeon), using imaging to help guide planning before surgery (with preference for MRI), and decisions based on each individual. Those with more advanced skill in working with bowel endometriosis cite low complication rates. (You can find more on the experts’ opinions in Nancy’s Nook Facebook Group in Unit 2: Surgery).
