What are the First Signs and Symptoms of Endometriosis: Everything You Need to Know
Table of contents
- What is the Endometrium?
- What is Endometriosis Pain?
- Mechanisms of Signs and Symptoms of Endometriosis :
- Painful Periods (dysmenorrhea)
- Diarrhea During Menstrual Periods
- Pain During Intercourse (Dyspareunia)
- Abdominal or Pelvic Pain After Vaginal Sex
- Painful Urination During or Between Menstrual Periods (Dysuria)
- Painful Bowel Movements During or Between Menstrual Periods (Dyschezia)
- Gastrointestinal Problems, Including Bloating, Diarrhea, Constipation, and Nausea
- Causes of Endometriosis
- Complications of Endometriosis
- Diagnosis of Endometriosis
- Treatment for Endometriosis
- Surgical Treatment Options for Endometriosis:
- Multidisciplinary Care
Sharp. Stabbing. Burning. Throbbing. Aching. All these adjectives have been used to describe endometriosis pain. Endometriosis is a condition that, for some women, can cause excruciating uterus pain. Some describe it as feeling like their insides are being pulled out of their bodies. Even worse – endometriosis pain medication doesn’t cut through or provide relief for many patients with this condition. Therefore, an endometriosis diagnosis can be very serious and life-changing news.
Our commitment to our patients runs deep, and our mission is to help patients with endometriosis pain and other complications find the skilled doctors they need.
As our first introduction to the disorder, we will give you a brief overview of the signs and symptoms of endometriosis, its causes, complications, and treatment options (or, as we like to call it – hope). First, we will give you general information on the disease and cover what endometriosis is.
What is the Endometrium?
The endometrium, also known as the endometrial lining, is the tissue that comprises the “wallpaper”, or lining of the uterus. The uterus is the pear-shaped organ that houses a growing baby. During pregnancy and menstruation, the endometrium plays vital functions.
What is Endometriosis Pain?
Endometriosis is pronounced (en-doe-me-tree-O-sis). Endometriosis is a medical condition in which tissue similar to what normally lines the inner walls of the uterus, also known as the endometrium, grows outside the uterus. It is often a very painful, even debilitating disorder. It may involve the ovaries, fallopian tubes, bowels, vagina, cervix, and the tissues that line the pelvis. In rare cases, it can also affect other organs, such as the bladder, kidneys, or lungs.
Signs and Symptoms of Endometriosis Pain
Not all women will experience the same symptoms of endometriosis or degree of intensity/severity. Some women may not experience any symptoms at all.
It is also important to keep in mind that the severity of symptoms is not a solid indicator of the progress of the disease. There are women with advanced stages of endometriosis who experience no symptoms at all and others with mild cases who endure many. Common endometriosis pain symptoms include:
- Painful periods, or dysmenorrhea
- Infertility
- Diarrhea during period
- Pain during intercourse
- Heavy or abnormal menstrual flow
- Abdominal or pelvic pain after vaginal sex
- Painful urination during or between menstrual periods
- Painful bowel movements during or between menstrual periods
- Gastrointestinal problems, including bloating, diarrhea, constipation, and/or nausea
Mechanisms of Signs and Symptoms of Endometriosis:
Painful Periods (dysmenorrhea)
Cyclic release of multiple inflammatory factors activates nerve fiber growth, leads to cell damage and fibrosis, and exacerbates pain during periods.
Infertility
The overall mechanisms can include tubal blockage, local inflammation, uterine muscle dysfunction, local hormonal alterations, and much more.
Diarrhea During Menstrual Periods
Diarrhea may result from endometriosis growing directly on the rectal muscle or endometriosis inflammatory substances. Local production of inflammatory molecules can lead to hyper-motility of the sigmoid and rectum muscles, which can manifest as cramping and diarrhea.
Pain During Intercourse (Dyspareunia)
Endometriosis implants have more nerve endings than usual (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 common locations of endo implants. Once this pain occurs and local inflammation further causes tension in the pelvic floor, the muscles surrounding the vagina can contract, which worsens the problem.
Heavy or abnormal menstrual flow
Endometriosis can impact your bleeding by increasing stress from pain or damage to the ovaries, which can change local hormonal function.
Abdominal or Pelvic Pain After Vaginal Sex
Uterine and pelvic floor spasms are part of regular orgasms. When these areas are hypersensitive due to endometriosis, spasms lead to continued contractions and pain that lasts for a while. 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 probably recognize, any event that stirs up the pelvis and causes some trauma leads to increased molecular signaling, further amplifying the problem.
Painful Urination During or Between Menstrual Periods (Dysuria)
Painful and frequent urination is a prevalent symptom of endometriosis. Endo cells and responding inflammatory cells produce inflammatory molecular signals that aggregate in the area of injury. These molecular signals affect all pelvic organs, including the bladder, leading to bladder wall spasms. Moreover, interstitial cystitis is common in endometriosis patients and can also be a factor. In the worst-case scenario, endo lesions implant inside the bladder, which can also cause cyclic bleeding from the bladder (hematuria).
Painful Bowel Movements During or Between Menstrual Periods (Dyschezia)
Endometriosis causes inflammation and fibrosis or scarring as your body attempts to heal. This inflammation and fibrosis can severely alter the anatomy in the pelvis and distort the rectal course, gluing it to the uterus, cervix, and posterior vaginal wall. This angulation can cause constipation and trouble evacuating stool, while the inflammatory signals cause the rectal muscles to hyper-contract. These mechanisms lead to painful bowel movements, which worsen during the cyclic increases in inflammatory molecules. In the worst-case scenario, the endo will grow through the rectum wall over time, causing cyclic rectal bleeding.
Gastrointestinal Problems, Including Bloating, Diarrhea, Constipation, and Nausea
Generally, intestinal symptoms of endometriosis can be direct or indirect or related to conditions like small intestinal bacterial overgrowth (SIBO). Even if there are no direct implants on the bowel, the endo inside the abdomen and pelvis can cause enough inflammation to irritate the intestine and cause symptoms. In addition, endometriosis implants directly on the bowel can worsen the symptoms.
Causes of Endometriosis
One cause of endometriosis is the direct transplantation of endometrial cells into the abdominal wall during a medical procedure, such as a cesarean section. Besides this known cause of endometriosis, other theories exist as to how it develops:
1. One theory is that during the menstrual cycle, a reverse process takes place where the tissue backs up through the fallopian tubes and into the abdominal cavity, where it attaches and grows.
2. Another theory is a genetic link. This is based on studies that show if someone has a family member with endometriosis, they are more likely to have it as well.
3. Some also suggest that the endometrial tissues travel and implant in other body parts via blood or lymphatic channels, like cancer cells spread.
4. A fourth theory suggests that all cells throughout the body have the ability to transform into endometrial cells.
Complications of Endometriosis
The following are complications of endometriosis if left untreated or in advanced stages of the disorder:
- Infertility/subfertility
- Chronic pelvic pain that can result in disability
- Anatomic disruption of involved organ systems (i.e., adhesions, ruptured cysts, renal failure)
Diagnosis of Endometriosis
The diagnosis starts with assessing signs and symptoms and then performing imaging studies such as MRI and ultrasonography. But the confirmation or exclusion of the endometriosis diagnosis is only possible with surgical biopsy and histopathology. Laparoscopy is the gold-standard surgical modality for diagnosis in all cases.
Treatment for Endometriosis
Endometriosis needs a multidisciplinary team approach for effective and holistic treatment. This team should include the following medical professionals:
- Nutritionist
- Physical therapist
- Endometriosis surgeon
- Mental health therapist
- Pain management specialist
Pain is often the biggest complaint from patients with endometriosis. Therefore, many treatment options are aimed at pain control. So first, here are some options for women to help temporarily ease the pain of endometriosis:
- Exercise
- Meditation
- Breath work
- Heating pads
- Rest and relaxation
- Prevention of constipation
These therapies may be used in combination with medical and/or surgical options to lessen the pelvic pain associated with this disorder. Furthermore, alternative therapies exist that may be used in conjunction with other interventions, and those include but are not limited to:
- Homeopathy
- Immune therapy
- Allergy management
- Nutritional approached
- Traditional Chinese medicine
*Be sure to discuss any of these treatment options with a physician before implementing them.
The Right Medical Treatment For You:
Options for medical and/or surgical treatments for endometriosis are going to depend on several factors, including:
- Desire for pregnancy
- The extent of the disease
- Type and severity of symptoms
- Patient opinions and preferences
- Overall health and medical history
- Expectations of the course of the disease
- Patients’ tolerance level for medications, therapies, and/or procedures
In some cases, management of pain might be the only treatment. In others, medical options may be considered. The following are typical non-surgical, medical treatments for endometriosis:
- “Watch and Wait” approach, where the course of the disease is monitored and treated accordingly
- Pain medication (anything from non-steroidal anti-inflammatory drugs [NSAIDs] to other over-the-counter and/or prescription analgesics)
- Hormonal therapy, such as:
- Progestins
- Oral contraceptives with both estrogen and progestin to reduce menstrual flow and block ovulation
- Danazol (a synthetic derivative of the male hormone testosterone)
- Gonadotropin-releasing hormone antagonist, which stops ovarian hormone production
Surgical Treatment Options for Endometriosis:
Despite their effectiveness in symptom control, pain medications can have significant side effects. Moreover, these medications do not stop the progression of the disease, and symptoms might return once stopped. But on the other side, surgery can lead to long-term relief and can prevent further damage to tissues. Your treatment plan should be a shared decision based on your desires, goals, and abilities.
Almost all endometriosis surgical procedures are laparoscopic or robotic. These are minimally invasive surgeries in which small tubes with lights and cameras are inserted into the abdominal wall. It allows the doctor to see the internal organs and remove endometriosis.
Excision of Endometriosis
In this technique, a surgeon cuts out much or all of the endometriosis lesions from the body. Therefore, surgeons avoid leaving any endometriosis lesions behind while preserving normal tissues. This technique is widely adopted by highly skilled endometriosis surgeons who are world leaders.
Ablation of Endometriosis
In this technique, a surgeon burns the surface of the endometriosis lesions and leaves them in the body. Most top experts highly criticize this ablation method. Ablation is most popular with surgeons who have not received enough training to do excision. As a result, these surgeons are not comfortable performing excision, and they do the ablation.
Hysterectomy
this is a surgery in which surgeons remove the uterus and sometimes ovaries. But, many surgeons consider hysterectomy an outdated and ineffective treatment for endometriosis. Almost all top endometriosis surgeons reject doing it unless there is a clear indication for hysterectomy such as adenomyosis.
Laparotomy
this surgical procedure cuts and opens the abdomen and does not use thin tubes. Therefore it is more extensive than a laparoscopy. Very few surgeons still do laparotomy because of its complications. Almost none of the top endometriosis surgeons do laparotomy for endometriosis.
Multidisciplinary Care
Along with effective surgical treatment, the patient should start working with endometriosis experts in physical therapy, mental health, nutrition, and pain management to achieve the best possible outcome.
Get in touch with Dr. Steve Vasilev
Physical Therapy Before Excision Surgery for Endometriosis
Table of contents
- Physical Therapists can Optimize Care by Helping a Patient Get to a Specialist while Providing Physical Therapy Treatment.
- Endo Specialists’ Wait Times Vary Greatly Depending on Where You are Located.
- Most Studies Research the Effectiveness of Physical Therapy Following Excision Surgery. What About Physical Therapy Before Excision Surgery?
- A Few Factors to Keep in Mind if You are Seeking Pelvic Physical Therapy Before Excision Surgery
Endometriosis can cause multiple issues for patients. And it can create the need for a multidisciplinary care team to address chronic pelvic pain. Physical therapy is one example of part of a multidisciplinary treatment plan for endometriosis symptoms. Guest writer Rebecca Patton, PT, DPT, discusses considerations for using physical therapy while awaiting excision surgery:
Pelvic physical therapy has gained more following and prompted much-needed discussions in recent years. However, pelvic physical therapy looks quite different for someone with chronic pelvic pain and endometriosis.
The reality is that pelvic physical therapists may be the first line of defense to refer a patient to a specialist. First, because we have direct access, meaning a patient can see us for an evaluation before seeing a physician. Second, because symptoms of endometriosis are often missed or dismissed by referring providers. In the latter case, someone may be referred to physical therapy before excision surgery or even before seeing an endo specialist.
Physical Therapists can Optimize Care by Helping a Patient Get to a Specialist while Providing Physical Therapy Treatment.
If we are seeking to provide the best care available for the treatment of endo, getting a faster diagnosis and referring a patient to an excision specialist is the primary goal. With a thorough medical history including bowel and bladder habits, menstrual symptoms, pelvic pain symptoms, previous treatment, and understanding the patient’s experience, a pelvic physical therapist can create a differential diagnosis list that may include endometriosis. If endometriosis is suspected, a referral to an excision specialist should be given to the patient and explained.
Endo Specialists’ Wait Times Vary Greatly Depending on Where You are Located.
In my personal experience in Phoenix, AZ, a large metropolitan area with several specialists, it takes anywhere from 3-12 months. More time if we are in the middle of a global pandemic. Decreased access in rural areas may also increase waiting times. One positive change is the inclusion of virtual appointments which may improve access for those in rural areas.
During the waiting period, the goal is to manage pain and maintain some regularity with bowel and bladder habits until excision surgery. Internal pelvic floor retraining may or may not be appropriate during this time.
As mentioned before, physical therapy before excision surgery is going to look different from treatments for other conditions. As a patient, you want to ensure the physical therapist you are seeing treats patients with endo regularly. You may want to consult with them prior about how often they treat patients with endo and what treatments they use specifically. Additional coursework for visceral and abdominal manual therapy techniques, nerve mobilization, and myofascial therapy techniques will be helpful.
Most Studies Research the Effectiveness of Physical Therapy Following Excision Surgery. What About Physical Therapy Before Excision Surgery?
Zhao et al. (1) found that 12 weeks of PMR (progressive muscle relaxation) training is effective in improving anxiety, depression, and quality of life of endometriosis patients under GnRH agonist therapy. These participants had not received excision surgery.
Awad et al. (2) found improvements in posture and pain with an 8-week regular exercise program in those diagnosed with mild to moderate endometriosis. This exercise program included posture awareness, diaphragm breathing, muscle relaxation techniques, lower back and hip stretches, and walking. Of note, this exercise program was not vigorous exercise. These participants were also receiving hormonal treatment but not receiving pain medication.
Both studies did not say that physical exercise or PMR plays a role in the prevention of the occurrence or progression of endometriosis. Both studies were short-term (8-12 weeks) and did not explore pain management directly before excision or outcomes after excision.
In the time that a patient is waiting for excision surgery, I believe physical therapy treatment can be effective at minimizing overall pain levels and improving quality of life.
A Few Factors to Keep in Mind if You are Seeking Pelvic Physical Therapy Before Excision Surgery
1. Your symptoms after physical therapy should not last more than 1-2 days and should feel manageable. Being bedridden for a week after physical therapy is not a helpful treatment. If you experience this, be sure to communicate it with your physical therapist to adjust the plan. Not all pelvic PTs are experienced with this type of treatment and they may create an exercise plan that is too vigorous.
2. Internal pelvic floor treatment is not always the most helpful in this situation and may exacerbate symptoms. An individualized plan is important to discuss with your provider.
3. You are in charge of your body. If you don’t feel like treatment is working then communicate that to your team and discuss other options. It is always okay to voice your concerns to change the treatment to fit you best.
4. Treatment before surgery requires a multidisciplinary team. This may include other pain management options including medication.
iCareBetter is doing the groundwork to vet pelvic physical therapists.
Rebecca Patton PT, DPT (If you are seeking a pelvic PT, I accept consultations through my website for in person and telehealth appointments: https://www.pattonpelvichealth.com/)
For more resources on physical therapy for endometriosis see: https://nancysnookendo.com/learning-library/treatment/lessons/physical-therapy-resources/
References
Zhao L, Wu H, Zhou X, et al.: Effects of progressive muscular relaxation training on anxiety, depression and quality of life of endometriosis patients under gonadotrophin-releasing hormone agonist therapy. Eur J Obstet Gynecol Reprod Biol, 2012, 162: 211–215. [PubMed] [Google Scholar]
Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. doi:10.1589/jpts.29.2112 [NCBI]
