Frequently Asked Questions About Endometriosis

1. What is endometriosis? 
   Endometriosis is a medical condition where tissue similar to the uterine lining is present outside the uterus in the abdomen, pelvis, or other areas in the body. The uterine lining is called endometrium (“metri” means uterus, and “endo” refers to inside lining). Endometriosis (“endometri” refers to endometrium, “osis” means medical condition). 

2. What are some symptoms of endometriosis?  
   Endometriosis will respond to the hormone estrogen and can cause pain with menstrual cycles, pain with sexual intercourse, infertility, and unrelenting chronic pelvic, back, hip-and leg pain. Not everyone has every symptom, and some individuals have had pregnancies. Endometriosis is a factor in up to 40% of cases of unexplained infertility.

3. How common are Intestinal endometriosis and urinary tract endometriosis? 
   The intestinal tract is involved in at least 10-15% of cases, and the urinary tract is involved in 1-2% of cases. 

4. How common is endometriosis? 
   Endometriosis effects 10-15% of the female population. 

5. How is endometriosis diagnosed? 
   Endometriosis is a “surgical diagnosis”. This means it cannot be diagnosed by taking your history, physical examination, blood or urine tests, x-rays, ultrasounds, MRI, or CT scan. The physician needs to look surgically, with laparoscopy (”lapar” means abdomen, “scopy” refers to a tube with a light). There are two reasons why endometriosis is a surgical diagnosis: 1) There is no correlation between the symptoms the person is experiencing and whether endometriosis is present and 2) There is no correlation between the severity of the symptoms and the extent of endometriosis present. 

6. What can I do to alleviate endometriosis symptoms while waiting for surgery?
   Interstitial cystitis is chronic pelvic pain of bladder origin. Interstitial cystitis and endometriosis can present with similar symptoms. Even when a person does not have interstitial cystitis, many patients find the interstitial cystitis nutrition guidelines helpful for achieving some pain relief. Avoiding spicy foods and acidic foods (such as citrus), alcohol, caffeine, chocolate, and artificial sweeteners. If a person has a history of getting up many times at night to urinate, it is prudent to limit fluids in the evening, such as not drinking fluids after 9:00 pm. Many individuals who had abdominal bloating and upset gastrointestinal tract, often feel better by avoiding gluten, dairy, soy, and simple sugars. Advil and Tylenol are safe effective medications that can be taken at the same time to alleviate pain. Even Advil and Tylenol are not totally harmless. Too much Tylenol would eventually harm the liver. Too much Advil or other non-steroidal anti-inflammatory (NSAID) can irritate the lining of the stomach, and if taken for years, may eventually harm the kidneys. No Advil, Ibuprofen, Motrin, Aleve, Aspirin for two weeks prior to surgery, since these can thin your blood. Narcotic medications can be nauseating, constipating, but may give more pain relief than Advil and Tylenol. Narcotic medications do not thin your blood, so theses medications are safe to take close to the date of surgery. Tylenol, regular and extra-strength, does not thin your blood, and is safe to take close to the date of surgery. All alternative approaches, including physical therapy, osteopathic manipulation, massage, and acupuncture, are safe to do and may give some pain relief in some people. Once surgery is complete, and the underlying endometriosis has been removed, then these treatments will be more effective.

7. Is there a connection between endometriosis and ovarian cancer?
   Every organ has different tissue types. Each tissue type within an organ can produce tumors, benign and malignant. The ovary has 3 tissue types: 1) Eggs and follicles can produce germ cell tumors, 2) Connective tissue within the ovary can produce stromal tumors, 3) The epithelial covering over the outer surface of the ovary can produce epithelial tumors. Approximately 70% of all ovarian tumors are epithelial. Epithelial tumors can be serous, mucinous, clear cell, or endometrioid. These subtypes are based on how the tumors look under the microscope. There is evidence in the literature that clear cell and endometrioid ovarian tumors may develop from endometriosis. Literature review shows only a mild association between endometriosis and the development of ovarian cancer. The relationship of endometriosis and ovarian cancer is not confirmed. (Endometriosis and ovarian cancer: a Systematic review. Sayasneh A, Tsivos D Crawford R. ISRN Obstet Gynecol, 2011.) A literature review published in early 2014 using the key-words “endometriosis” and “ovarian” found 1 prospective cohort study, 10 retrospective cohorts, and 5 case-control studies. All of these studies, except for one, did not include operative confirmation of endometriosis. Authors found a consistent association between endometriosis and clear cell and endometrioid cancer, but the authors concluded the epidemiological association linking endometriosis and ovarian cancer is not sufficient to impact current clinical practice. The authors concluded that prospective cohort studies with prior laparoscopic confirmation, localization, and staging of endometriosis are needed. (Endometriosis and Ovarian Cancer Risk: A Systematic Review of Epidemiologic Studies. Zafrakas M, Grimbizis G, Timologou A, Tarlatzis B. Front Surg. 2014; 1:14.) Therefore, to summarize what is known at this time, there is an association between epithelial cancers of the ovary and endometriosis, but there is currently not enough evidence to warrant alteration in endometriosis treatment.

8. Is my pain endometriosis?
   Pain is always real. In most situations, we can find what the pain is due to, and in most of these patients we can alleviate the pain. When the source of the pain is not found, what you really need is what the pain is not due to, that is not a tumor, not pregnancy-related, and you are not in medical danger. These questions can be answered. 
Endometriosis is a surgical diagnosis. This means it cannot be diagnosed by taking your history, physical examination, blood or urine tests, x-rays, ultrasounds, MRI, or CT scan. The physician needs to look surgically, with laparoscopy. There are 2 reasons why endometriosis is a surgical diagnosis: 1) There is no correlation between the symptoms a person has, and whether Endometriosis is present. 2) There is no correlation between the severity of the symptoms a person has, and extent of endometriosis present. Laparoscopic excision is better since you get a tissue diagnosis, but the surgeon has to at least look. Some lesions may look like they are definitely endometriosis, but it may not be confirmed on pathology. Other lesions are very subtle and not very suggestive of endometriosis, but pathology confirms it to be endometriosis. Therefore, with laparoscopic excision, you get to know what you do and don’t have, and you avoid labeling a patient with a condition they may not have.  With electrical cautery/fulguration and laser vaporization/ablation, no specimens are taken. I have seen patients with several prior surgeries and no tissue diagnosis. At my center we do laparoscopic excision. Increasing symptoms associated with the menstrual cycle is suggestive, but not proof of endometriosis. Endometriosis can present as menstrual pain, pain the rest of the month, or continuous pain. Response, or lack of response, of symptoms to medications, such as Lupron and BCPs, does not rule in or rule out the presence of endometriosis. I know that patients are told that response to medications indicates endometriosis, but I do not believe this to be true. Therefore, if pain is severe enough, and/or there is increasing concern, then you need diagnostic laparoscopy. Often with a quick diagnostic laparoscopy by a general gynecologist, subtle endometriosis is missed, and severe endometriosis is under-treated. This is why it is better and more cost effective to have surgery at a center that specializes in endometriosis excision.

9. Why do I still feel pain even after excision of my endometriosis?
   Abdominal, pelvic, back pain can have many sources, including but not limited to, endometriosis, pelvic inflammatory disease (PID), interstitial cystitis (IC—chronic pelvic pain of bladder origin), inflammatory bowel diseases (IBD)—chronic ulcerative colitis and crohn’s disease, irritable bowel syndrome (IBS) with constipation, diarrhea and abdominal bloating, and neuromuscular pains including conditions such as fibromyalgia. Coexisting tick-born diseases such as Lyme will also increase pain associated with all these conditions. Sometimes after laparoscopic excision, none of the specimens are confirmed as endometriosis on pathology, but the patient feels great. I excise areas that look abnormal, areas that are scarred and fibrotic, and/or are in locations that could explain the distribution of pain that the patient is experiencing. Sometimes after laparoscopic excision, some, most, or all the specimens are positive for endometriosis on pathology, but the patient still has pain. In that individual, there must be some other factor at work that is causing her pain. Therefore, it is not just whether you have endometriosis, but whether endometriosis is the root cause of your pain. Pelvic floor muscles respond to chronic pain conditions. Even after the disease is thoroughly removed some patients need physical therapy / biofeedback. Physical therapy has a better chance of being successful after the underlying cause for the pain is removed. To have the best chance for pain relief, we need to treat the whole person and eliminate all sources of pain that we can identify.