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What is Endometriosis?

Mar 24, 2015

Endometriosis is a common condition in menstruating women.  It can cause pain and infertility.  It can also be found in women who have no symptoms at all.  We do not know what causes endometriosis.  There are theories that it is caused by retrograde menstruation (period blood that goes back through the tubes instead of out), by metaplasia (meaning that cells that would normally not be endometrial cells are stimulated to change into endometrial cells), by surgical spread (into C-section incisions or after laparoscopy) or by some sort of immune dysregulation but we just do not know.  We do not know why some women have severe pain with endometriosis and why some women do not feel any pain at all.  About 15% of women have endometriosis.  About 70% of women with pelvic pain have endometriosis.

The lining of the uterus is called the endometrium.  This is the lining that grows every month and sheds to become the period if the woman does not become pregnant.  Those same endometrial cells can grow outside of the uterus.  When that happens, those cells are called endometriosis.  Even though they are in the wrong place, they continue to go through the same cycle of growing and bleeding.  This can create areas of inflammation and scarring.  It is important to know that the stimulation, growth and bleeding of the endometrial cells is not caused by the uterus.  The hormone, estrogen, secreted by a woman’s ovaries stimulates the cells to grow.  As a woman progresses through the menstrual cycle, the ovarian production of estrogen and progesterone rises and then falls.  This causes the endometrial cells, and endometriosis to regress and bleed.  If the bleeding occurs in the lining of the uterus, it simply flows out as the menses or the period.  If the bleeding occurs elsewhere, the blood causes inflammation and swelling.  After the inflammation and swelling are repeated month after month scarring can occur.  

Endometriosis has been reported almost everywhere in the body except for the spleen.  The most common sites for endometriosis to be found are in the pelvis, on the fallopian tubes, ovaries and in the cul-de-sac which is the space between the uterus and rectum.  Symptoms of endometriosis can vary depending on where it is present.  Many women suffer for many years before being diagnosed.  They are often told that there is no reason for them to be feeling so much pain.  The pain is not in your head.  If you think you might have endometriosis, you should search for a doctor who specializes in treating pelvic pain and endometriosis so that you can get the care you need.

Most women with endometriosis complain of painful periods.  Many times, when the pain begins it happens just during the period or during the period and during ovulation.  With time, the number of days of pain per month increases, starting days or even weeks before the period starts and worsens up to the start of the period, decreasing when the bleeding has stopped.  If the endometriosis remains undiagnosed and untreated, the timing of the pain can extend to chronic, daily pain.

The inflammation and scarring that can occur behind the uterus will often result in tender nodules that can cause pain during intercourse (dyspareunia) or tampon insertion.  If the disease causes inflammation or scarring around the bowel or rectum, painful bowel movements (dyschezia) can ensue.  Often times, women will see a gastroenterologist first and be given the diagnosis of irritable bowel syndrome because the endometriosis can cause inflammation and irritation of the bowel.  In severe cases, endometriosis can grow through the wall of the bowel and enter the inside of the intestines.  This can result in bloody stools during your period.  If you have blood in your bowel movements during your period, you should be evaluated by both a gynecologist and a gastroenterologist to determine if you have intestinal endometriosis.

When endometriosis grows on the bladder it can cause pain with urination (dysuria), feelings of urgency when the bladder is full or the sensation that you need to go the bathroom frequently and can also cause pain with intercourse or tampon insertion.  The inflammation of the endometriosis can cause bladder spasms and discomfort even when you do not need to urinate.  The symptoms of endometriosis of the bladder can be confused with interstitial cystitis, another inflammatory disease of the bladder.  Both conditions can cause bloody urine or blood in the urine.  It may be necessary to have a cystoscopy to evaluate the inside of the bladder.

Less common sites for endometriosis include the lining of the lungs, the nose, the belly button, the abdominal wall (especially in women who have had surgery), the cervix and the vagina or vulva. While hormonal changes alone can cause breathing changes or increased pain during the period from muscle fatigue or joint inflammation, any pain that only occurs during the period might be due to endometriosis.

The only way to know for sure if you have endometriosis is to have a biopsy of the endometriosis and have the pathologist confirm that the cells are endometrial cells outside of the uterus.  This generally requires laparoscopic surgery to visualize, biopsy and remove any endometriosis.  However, not everybody needs surgery.  Endometriosis is not curable, unless you remove the ovaries to remove the hormonal stimulation.  Since removing the ovaries causes menopause, this is not the first line of treatment, especially for a younger woman.  Taking out the uterus (hysterectomy) does not treat endometriosis at all because the ovaries are still present and producing estrogen.  Endometriosis almost always recurs, so if you can be diagnosed and treated without surgery, you should feel comfortable doing so.  A good history and physical exam by an experienced clinician can give you a good idea if you have endometriosis or not.  Many times the pain and inflammation can be controlled with medications.  

The cells from the lining of the uterus can also grow into and invade the muscle of the uterus. This is called adenomyosis.  Adenomyosis can occur with or without endometriosis.  Adenomyosis can only be diagnosed for sure by removing the uterus (hysterectomy).  In this case, hysterectomy is also the cure.  However, adenomyosis can be suspected by a history of severely painful periods without pain at other times.  Often times, the uterus is bulky and tender on examination.  Adenomyosis can sometimes be treated with hormonal medications if hysterectomy is not desired.

As always, talk to your doctor.  A complete history and appropriate physical exam are the most important factors in diagnosing your situation and providing you with the right treatment.  If your doctor is not familiar with endometriosis, find a doctor who is.

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