I am infertile. Do I have endometriosis?
What is endometriosis?
Endometriosis is a disease where the endometrial tissues, the tissues in the lining of the uterus (endometrium), grow outside the uterus. These tissues can be found in the pelvis, ovaries, bowels, bladder, fallopian tubes, vagina, cervix, bladder, or rectum.
Endometriosis affects 8 – 10% of women in childbearing age. It is found in 40-50% of infertile patients.
It is important for you, especially if you are at a childbearing age, to understand this disease because it might cause infertility.
If you are infertile and there is no known reason, your doctor at the Al-Khalidi Women’s Health and Breast Center may perform various tests (more details below) to determine whether you have endometriosis.
You could have only one symptom or more than one to be diagnosed with endometriosis. In many cases, women have no symptoms.
- Dysmenorrhea: Pain during menstruation is the most common symptom. The pain starts with your menstrual flow and becomes more acute during the course of menstruation. This is different from the typical pre-menstrual pain where you have pain before your menstrual flow and it disappears during the course of menstruation.
- Chronic pelvic pain: You may have pain in your pelvis for three to four months and the cause is unknown. Your doctor will start to think of endometriosis as a possible cause of your pain.
- Deep dyspareunia: You may have deep pain during intercourse. It is called deep pain because you may experience pain deep inside where the endometriosis spots are and not a superficial pain upon penetration of the vagina.
- Cyclical abdominal pain: There may be pain during bowel movements and at times you may find blood during defecation only when you have menstrual flow; or you may have bladder pain only during menstruation.
Bleeding or spotting
You may have bleeding or spotting between your menstrual flows.
Stomach or digestive problems
You may have diarrhea, constipation, bloating or nausea between menstrual flows.
Severe pelvic adhesions caused by endometriosis causes infertility. Doctors do not yet fully understand how endometriosis causes infertility.
If you are infertile and the cause is unknown, your doctor may investigate endometriosis as a cause. If you have any one or more of the symptoms above, talk to your doctor about endometriosis.
What causes endometriosis?
No one knows for sure what causes endometriosis. Researchers are studying possible causes:
- Problems with menstrual period flow. The most likely cause of endometriosis is retrograde menstrual flow. This is when some of the tissues shed during the period migrate through the fallopian tube into other areas of the body, such as the pelvis.
- Genetic factors. Genetics is thought to play a role in endometriosis because it runs in families.
- Immune system problems. A faulty immune system may fail to find and destroy endometrial tissue growing outside of the uterus.
- Surgery. During a surgery to the abdominal area, such as a Cesarean (C-section) or hysterectomy, endometrial tissue could be moved by mistake and can end up in other areas, such as in abdominal scars.
What happens if I don’t treat endometriosis?
Even though endometriosis growths are benign (not cancerous), they can still cause problems.
Endometriosis occurs when tissue that is normally inside your uterus grows outside of your uterus. Yet during your menstrual period, the endometriosis growths bleed just like the lining of your uterus. This can cause swelling and pain because the tissue grows and bleeds in an area where it cannot easily get out of your body.
The growths may also continue to expand and cause problems, such as:
- Blockage of your fallopian tubes. When endometriosis growths cover or grow into your ovaries, cysts could form as a result of the trapped blood in the ovaries.
- Inflammation (swelling).
- Formation of scar tissue and adhesions, which can can bind your organs together. You may experience pelvic pain from these scar tissues and it may be hard for you to get pregnant.
- Problems in your intestines and bladder.
If you are a woman living outside Jordan, you can come for one day for a full examination. Your doctor at the Women’s Health and Breast Center will do a vaginal ultrasound to determine if there are cysts on your ovaries. Your doctor will also perform a pelvic examination to see if there are any adhesions and she may request that you do the blood test to rule out active endometriosis.
How is endometriosis diagnosed?
The diagnosis of endometriosis is often delayed, as the only tool of definite diagnosis is through a laparoscopy, which is a type of surgery. First, your doctor may diagnose you through a pelvic exam.
Pelvic exam: Your doctor may feel for cysts or scars behind your uterus. Small scars and cysts are more difficult for your doctor to feel, however.
Vaginal ultrasound: Your doctor may see an endometrioma, a cyst full of blood in the ovary, through a vaginal ultrasound and then assess your ovarian cyst. A cyst with blood that is persistent and does not disappear on its own might indicate endometriosis.
Blood tests: Blood tests, endometriosis markers, are presently under research as a reliable way to diagnose endometriosis. There are blood tests like CA125 in which the parameter gets higher during active endometriosis and the blood test will show a positive result. But while a positive reading confirms diagnosis of endometriosis, a negative one does not rule out the disease because you can have an inactive endometriosis disease. So this test is not yet completely reliable.
Laparoscopy: This is a type of surgery that allows doctors to see inside your pelvic area and see your endometriosis tissue. Sometimes a small sample of your tissue is taken for testing. Laparoscopy is the only way to be certain you have endometriosis. But it is a surgery and your doctor will rule out endometriosis by the less invasive forms of diagnosis first.
There is no cure at this time. Treatment is available to stop the growth of endometriosis and your pain. Treatment depends on your age and fertility goals. Your doctor will discuss with you the options for treatment that will work best for you.
If you are not trying to get pregnant, hormonal birth control is generally the first step in treatment. This may include:
- Extended-cycle (you have only a few periods a year) or continuous cycle (you have no periods) birth control. These types of hormonal birth control approaches are available in the pill or the shot forms; they help stop bleeding and reduce or eliminate pain.
- Intrauterine device (IUD) to help reduce pain and bleeding. The hormonal IUD protects against pregnancy for up to 7 years. But the hormonal IUD may not help your pain and bleeding because of having endometriosis for that long.
Hormonal treatment works only as long as it is taken and is best for women who do not have severe pain or symptoms. Here is the range of hormonal treatments:
- Progesterone or Progestins: Progesterone counteracts estrogen and prevents growth of the endometrium. This therapy is used to reduce or stop menstrual flow. Progestins are chemical variants of natural progesterone, such as Dienogest (Visanne).
- Hormone contraception therapy: Oral contraceptives help in reducing menstrual pain related to endometriosis. They work by reducing or eliminating menstrual flow and providing estrogen support. This approach to treatment is usually long-term.
- Danazol (Danocrine) and gestrinone are both suppressive steroids with some androgenic activity. They both prevent the growth of endometriosis but both also remain in limited use because they may cause hirsutism (excessive hairiness) and voice changes.
- Gonadotropin-releasing hormone (GnRH) agents: This is a synthetic peptide modeled after the GnRH hormone, which is responsible for releasing the pituitary hormones: Luteinizing hormone (LH) and follicle stimulating hormone (FSH). The GnRH agents are thought to work by decreasing hormone levels. However, a 2010 Cochrane review found that GnRH agonists were effective at pain relief for endometriosis, but were not more effective than other drugs like danazol or intrauterine progestagen and had more side effects than danazol.
- Aromatase inhibitors are medications that block the formation of estrogen and are gaining the attention of researchers treating endometriosis.
Your doctor may choose surgery if you have severe symptoms, when hormone medication is not giving you relief from your pain or if you have fertility problems or if you are fertile and you want to get pregnant. The surgery is done by laparoscopy to burn the endometrial spots to prevent them from bleeding during menstruation or to remove ovarian cysts that are large enough to affect the ovaries.
Pregnancy is a treatment simply because when you are pregnant you do not menstruate. If you do not menstruate you will not have pain.
If you have infertility because of endometriosis, your doctor will likely choose IVF. But IVF has a lower success rate in patients with endometriosis. Therefore, your doctor at the Al-Khalidi Women’s Health and Breast Center will advise you to first have an anti-mullerian hormone test (AMH) to see if the endometriosis has affected your ovarian reserve. If you then want pregnancy your doctor will choose the shortest way for you to get pregnant. Your endometriosis will improve during pregnancy.
Your doctor will assess whether you are a good candidate for IVF treatment based on your age, severity of endometriosis, presence of other infertility factors and results of past treatments.
Is endometriosis preventable?
There is no way to prevent endometriosis; however, you can reduce your chances of getting endometriosis through simple lifestyle changes:
Exercise regularly on a daily basis, about half an hour a day. Regular exercise will benefit you all around, and specifically for endometriosis patients regular exercise lowers your body fat which helps decrease the amount of excess estrogen circulating in your body.
Avoid excessive amounts of drinks with caffeine. This includes sodas and green tea, as caffeinated drinks can raise estrogen levels. Restrict caffeine drinks to one glass a day.
Avoid excessive intake of alcohol, as it also raises estrogen levels. Restrict alcohol to no more than one glass a day.
This information was provided by Consultant of Obstetrics and Gynecology and Infertility at Al-Khalidi Women’s Health and Breast Center, Dr Hala Y. El Ghossein.