In this article:
What is endometriosis?
More than 176 million women are diagnosed with endometriosis on a global scale, with approximately 1 in every 10 women affected by this disorder. (1)
Among Japanese women, the incidence is estimated to be higher, with 1 in every 4 women diagnosed with this problem.
Endometriosis refers to the presence and growth of abnormal tissue outside the uterus, which resembles the endometrium lining inside the womb but is uniquely different.
This overgrowth of tissue can cause a variety of health problems, including pelvic pain and infertility.
In response to the ovary’s hormonal changes, the endometrial-like tissue causes localized bleeding like a period. This triggers inflammation in the surrounding tissue, resulting in scar tissue formation and adhesions.
It is essential to know that endometriosis tissues are different from healthy endometrial tissue.
First, the endometrial-like tissue uniquely makes its own estrogen, and it lacks enzymes to degrade the estrogen locally.
Second, this tissue is resistant to progesterone, which is the hormone that counters the effect of estrogen.
In summary, endometriosis is an inflammatory disease, which often behaves very aggressively.
The endometrial-like tissue produces its own estrogen, causes local bleedings, invades local tissue, and is capable of slowly destroying nearby organs, including the ovary, fallopian tubes, intestines, ureter, and bladder.
Are endometrial cyst and chocolate cyst the same thing?
Yes, another name for an endometrial cyst (endometrioma) of the ovary is a chocolate cyst.
Chocolate cyst gets its name from the fluid it contains, which resembles fudge chocolate both in color and texture. It is caused by an invasion of endometriosis inside the ovarian follicular cyst (ovulation).
Often, the actual origin of chocolate cysts is endometriosis implants on the pelvic sidewall area, behind the ovary. Your surgeon needs to identify the root cause of your ovarian chocolate cyst before treating it accordingly.
What are the different stages of endometriosis?
The American Society of Reproductive Medicine (ASRM) characterized the four different stages of endometriosis, depending on the extent and involvement of the disease in the pelvic cavity and adjoining organs. (2)
Stage 1 is called “minimum,” which is characterized by superficial lesions, commonly in the pelvic sidewall or the pouch of Douglas area.
Stage 2 is “mild,” which is characterized by superficial lesions and some deep lesions, with some adhesions.
Stage 3 is “moderate” and includes some ovarian chocolate cysts and adhesions in the ovaries and pelvic sidewall area.
Stage 4 is “severe,” which results in the development of large chocolate cysts and severe adhesions in the bladder and intestines. Some severe cases of stage 4 are called “frozen pelvis,” in which the pouch of Douglas is already obliterated.
The classification criteria include the spread of the endometriosis disease in the pelvic cavity, extent of adhesions (such as in the ovary, fallopian tubes, uterus, and intestine), presence of fallopian tube blockage, and involvement of various pelvic organs.
What are the common symptoms of endometriosis?
The symptoms of endometriosis depend upon the location, extent, and depth of the disease.
The common symptoms and various side effects of endometriosis include:
- Pelvic pain, low back pain, leg pain, groin pain, pain during intercourse (especially endometriosis lesions in the uterosacral ligaments, perirectal spaces, posterior cul-de-sac area, and pelvic sidewalls)
- Heavy periods, prolonged periods, passing blood clots, premenstrual spotting, intermenstrual spotting, irregular periods, spotting after sex
- Chronic fatigue, abdominal bloating, which is also known as “endo belly” (some systemic manifestations of endometriosis)
- Frequent urination, an urgency to urinate, painful urination, hematuria, flank pain (endometriosis in the bladder and ureter areas)
- Bloody stool, nausea, vomiting, pain with bowel movement, diarrhea, constipation (endometriosis in the intestines and near the gastrointestinal area)
- Migraine headache, joint pain, skin breakdown, acne, heart pain, chest pain, shoulder pain
- Infertility, subfertility, recurrent miscarriages, failed IVF
- Depression, anxiety, insomnia, lack of concentration, brain fog, forgetfulness
Does endometriosis lead to weight gain or weight loss?
Weight gain or weight loss has not been directly attributed to endometriosis itself.
Still, the condition can cause abdominal bloating. This can lead to the appearance of what is called an “endo belly” as part of its systemic inflammatory process.
Weight gain actually can result as a side effect to specific treatment modalities for endometriosis.
For instance, progesterone treatment (such as IM Depo-Provera injection and mini pills) may cause weight gain along with bloating, depression, and irregular spotting.
Also, weight gain may be caused by a lack of regular exercise. A lot of patients with endometriosis find it difficult to remain physically active in the face of ongoing, chronic pelvic pain.
Can endometriosis lead to anxiety and depression?
Yes, anxiety and depression are some of the major effects of endometriosis.
Patients with endometriosis have increased risks of developing depression and anxiety in their lives. Just coping with repeated, stressful, painful episodes is often draining emotionally, physically, and socially.
Besides pain attacks, endometriosis produces various symptoms that may contribute to depression, including chronic fatigue, brain fog, lack of energy, lack of concentration, nausea, lack of appetite, and feeling of heaviness.
Thus, endometriosis often takes an enormous toll on the mental health of patients with endometriosis and their family members.
For patients, joining an endometriosis support group or awareness group is also important to find a sense of community and to know that they are not suffering alone.
If you are a family member, a significant other, or a friend of someone with endometriosis, please listen, support, and understand her.
Can endometriosis cause chronic stomach problems?
Yes, it can. Many people do not know endometriosis may cause various gastrointestinal and stomach symptoms. These symptoms may vary according to the location, depth, and extent of endometriosis lesions, but these are some of the commonly reported ones:
- Rectal pain and cramps
- Painful bowel movements
- Nausea and vomiting
- Pain with passing gas
- Abdominal bloating
- Bloody stools
- Abdominal pain
Many times, endometriosis that is accompanied by gastrointestinal symptoms is misdiagnosed as irritable bowel syndrome (IBS), which further delays the correct diagnosis and subsequent start of proper treatment.
Is it possible to cure endometriosis?
There is NO cure for endometriosis, neither for the short term nor for the long term. We still do not know why and how endometriosis develops in women’s bodies.
The “common myths” in the medical community are that hysterectomy, removing the ovaries (oophorectomy), menopause, or getting pregnant leads to a cure. However, the fact remains that none of these provide any verifiable cure for endometriosis.
Even though there is no cure, an effective treatment, such as advanced laparoscopic excision, is available to minimize the painful symptoms and future recurrence of endometriosis.
Is surgery the only course of treatment for women suffering from endometriosis?
No, there are both medical and surgical treatments for endometriosis.
Medical treatments include:
- Birth control pills
- Progesterone treatment (such as IM Depo-Provera)
- Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen and naproxen
- Intrauterine device (IUD)
- Lupron and Orilissa, which are GnRH agonist and antagonist, respectively (both produce significant menopause effects)
All of these medical treatments are for symptomatic relief. It means they only reduce the symptoms of endometriosis rather than treat it.
These medications are either pain medicines or drugs that cause hormonal suppression; they do not remove or eradicate the endometriosis lesions from your body.
Surgical treatments for endometriosis are aimed at removing (excision) or destructing (ablation or burning) the endometriosis lesions. These surgical approaches include:
- Operative laparoscopy ablation
- Da Vinci robotic surgery
- Operative laparoscopy excision
Ablation surgery is the superficial burning of endometriosis lesions using a laser beam or electrical cautery. However, the roots of the lesions are left intact.
Because the endometriosis lesions are incompletely treated, they tend to come back rather quickly. For this reason, I do not recommend ablation surgery for endometriosis treatment.
The Da Vinci robotic surgery is a new machine-operated surgical approach, in which a surgeon maneuvers or controls the mechanical arms of the robot from a distant console by “vision only” (no touch feeling). It provides a good 3D vision to the surgeon.
The biggest issue with this approach is that the robot does not offer any tactical sense to the surgeon.
As a result, the procedure easily misses many subtle endometriosis lesions, especially those hidden below the peritoneum (which require tactical senses to be detected).
Personally, I have seen many patients with endometriosis who were operated on by Da Vinci robotic surgeons. They continued to suffer pain even after the treatment as it failed to detect and address many of the deep-seated endometriosis lesions in their bodies.
The best surgical option is the high-definition 4K laparoscopic excision of endometriosis.
Unlike the Da Vinci way, which only offers 3D vision, this method offers the dual advantage of “feeling endometriosis tissue textures” and a close-contact “high-definition vision” to the surgeon.
Thus, deep endometriosis lesions can be exposed and excised precisely from their hidden roots.
Not all excision surgeries produce the same result. Successful excision depends upon the experience, strategy, meticulousness, skills, and techniques of the surgeon.
Thus, it is crucial for all patients with endometriosis to do diligent research on a surgeon before deciding to undergo surgery.
After a successful excision surgery, the patient is expected to adopt several lifestyle changes to manage the condition. These changes usually include switching to a healthier endometriosis diet, exercising regularly, and using stress reduction techniques.
What are some important points to remember regarding endometriosis?
Endometriosis is a very complex disease, which can manifest with a variety of many different symptoms. Unfortunately, endometriosis is still mostly unexplored and undermined in the medical and gynecologist community.
There is still a lack of correct knowledge and understanding regarding endometriosis, even among gynecologists!
Therefore, it is very important for all women and potential patients to know this disease (which affects 1 in 10 women) and to be equipped with the correct knowledge to spot and manage it.
If women become educated about endometriosis, they can protect themselves from any wrong medical advice or unwise treatment choice.
Please remember that Lupron and Orilissa both cause menopause without affecting endometriosis lesions, and patients will suffer new sets of tremendous drug side effects.
Also, hysterectomy is not the right treatment approach for endometriosis, as all endometriosis lesions are located outside the uterus.
Removing the uterus (and/or ovaries) does not remove the endometriosis lesions (which are located outside the uterus) and, thus, does not provide a cure for endometriosis.
Finding the right doctor or a true specialist is the most important first step. A doctor who has previous experience of successfully treating this condition can catch the disease even in its early stage and guide you to the proper and timely excision treatment.
Like I discussed in the above treatment section, many endometriosis lesions/roots develop from below the peritoneum.
The only way to detect these hidden lesions, which often cause deep pain, is by feeling the tissue. This important feeling of texture, which is entirely absent in the Da Vinci robotic method, is provided by the laparoscopy excision approach.
Finally, all patients with endometriosis are unique and different, so their care and treatments need to be carefully individualized. Please educate yourself and spread awareness about endometriosis.
Which age group is most affected by endometriosis?
Endometriosis affects the female population across various age groups, ranging from the start of puberty (12 years old) to well after the menopausal age. However, women between the ages of 25 and 35 years are the most commonly affected.
One study found the age group of 31-35 as the group with the most prevalence. (3)
However, an accurate prevalence study is rather challenging to do because patients with endometriosis have an average of delayed or missed diagnosis of several years.
Potentially many younger women will be diagnosed with endometriosis if such misdiagnoses and delays can be avoided.
Do women suffering from endometriosis have a higher risk of miscarriages?
Yes, some statistics suggest that patients with endometriosis are 80% more likely to suffer a miscarriage as opposed to women who do not have this condition.
One of the mechanisms that increase the chance of miscarriage is the development of endometriosis lesions around the uterus, tubes, and ovaries. This triggers a significant inflammatory environment within the uterine cavity.
Also, more immunological and chemical activities are detected in patients’ peritoneal fluids. These activities are sperm toxic and have an embryotoxic effect.
From my own experience, I saw so many patients with endometriosis who experienced recurrent multiple miscarriages.
However, after a successful excision of endometriosis lesions, the vast majority of these patients became pregnant naturally and were able to carry full-term babies.
Does endometriosis increase the risk of developing cancer?
Endometriosis is essentially a benign (non-cancer) disease.
However, the incidence of two forms of ovarian cancer, namely, clear cell carcinoma and endometrioid ovarian cancer, has been linked with the endometriosis chocolate cyst. But there is a less than 1% chance that the chocolate cysts will turn cancerous.
In general, endometriosis by itself does not increase the risk of various other cancers, such as endometrial cancer, breast cancer, colorectal cancer, cervical cancer, or other cancers.