Endometriosis

Endometriosis is a condition where the same type of cells that grow inside the uterus and come out every month with a period start growing somewhere else.  They can grow on ovaries, intestines, bladder, or anywhere in the belly.  In very rare cases, they can even grow somewhere outside of the abdomen.  As these cells grow, they can bleed at the time of a woman's period, which can cause pain.  Cysts can develop on the ovaries, and nodules of endometriosis can develop almost anywhere.   Because these cells are not supposed to be where they are, they can also cause an inflammatory response.  The body will try to attack them, which can lead to toxins and substances being secreted which may increase pain and impair fertility.  Nobody knows exactly what causes endometriosis.  The leading theory is that menstrual blood with living cells backs out the fallopian tubes during a period (which we know is true) and the live cells implant and grow where they land.  There may be some type of immune defect in women with endometriosis that allows this to happen without the body just clearing away the foreign cells.  The problem with this theory is that it does not explain the rare cases where endometriosis grows somewhere where the menstrual blood cannot reach (such as the lungs).  For now, however, it seem the most plausible explanation.

The symptoms of endometriosis are usually worsening pain with a woman's periods and/or infertility.  Usually, when she is just starting to have periods, there isn't a lot of pain.  As the endometriosis grows, the pain will get worse and worse.  Pain can then start to develop in between periods.  Eventually, there can be pain all the time that gets a lot stronger during a period.  Some women, however, will have no pain or only very mild pain with endometriosis.  They may only have infertility, or it can be discovered at the time of an ultrasound or even just a physical exam.

The diagnosis of endometriosis is difficult.  Sometimes it can be seen on an ultrasound or felt during a pelvic exam, but a lot of times it cannot.  Doctors often will rely on a woman's history of pain, although that is not 100% reliable either.  The only way to know for sure is to look inside the belly and see it.  This is often done by laparoscopy.  This is a surgery where a small scope (usually a centimeter or less in diameter) is placed through an incision in the belly button, and other instruments are placed through another one or two small incisions down near the pubic bone or out near the hip bone.  The surgeon can then look around and under all the structures in the pelvis to find the endometriosis.  If there is endometriosis, it can be removed, lasered, burned or otherwise destroyed.  In severe cases of endometriosis, the DaVinci robotic system can be helpful.  It allows finer control that is helpful in removing nodules and cysts and getting rid of scar tissue.  Sometimes a larger incision will be needed, although this is unusual.  Endometriosis is graded on a scale of one to four, with one being very minimal disease and four being severe endometriosis.

Treatment for endometriosis can be surgical, medical, or both.  The surgical treatment described above is used to remove as much endometriosis as possible.  There can be microscopic disease, however, that cannot be seen and therefore is not removed.  So medical treatment is often used afterwards to treat the microscopic disease.  Medical treatment involves hormone or medications to shut down the growth of the endometriosis.  It can be used as a first-line treatment or after surgery.  Birth control pills are an easy treatment option.  Birth control pills can give you some nausea for the first few weeks, breakthrough bleeding especially if they are not taken consistently, and raise the risk of blood clots in some women.  They work moderately well at keeping endometriosis at bay.  Progestins are based on the hormone progesterone, and they are very good at treating and preventing endometriosis.  There are pills (Aygestin is an example), shots (Depo-Provera), implants that go in the arm (Implanon) and IUD's (Mirena) with progestins, and all will work on endometriosis.  Depending on how they are given, they can also cause some irregular bleeding, constipation, bloating, and can sometimes increase appetite in the pill form.  Lupron is an injection that induces a menopause-like state, and that will also keep endometriosis from being able to grow.  It can cause hot flashes, moodiness, headaches and should only be given by itself for 6 months because of the risk of bone loss with longer use.  Danazol is a medication that is similar to male hormones like testosterone.  It is a pill and is also very good at treating and preventing endometriosis.  It can cause acne, hair growth in a male pattern, and rarely deepening of the voice.  Aromatase inhibitors such as Femara are a new treatment option.  They keep the body from being able to make estrogen, which is what makes endometriosis grow.  The side effects are similar to Lupron.  Pregnancy is also very good at treating endometriosis, as is breast feeding.  However, this is obviously only appropriate if you want to conceive.

When endometriosis causes infertility, things get more complicated.  Even small amounts of endometriosis appear to decrease fertility, but the medical treatments outlined above will all prevent pregnancy.  Surgical treatment can be used to remove as much endometriosis as possible and free up fallopian tubes and ovaries that may be scarred or blocked by the disease.  Fertility treatments are then usually given to improve the chances of conception and speed up the process, so that the endometriosis does not have a chance to grow back.  In severe cases, IVF (in vitro fertilization or the test tube baby procedure) can be helpful.  By removing eggs and having the fertilization and early growth happen in the lab away from the endometriosis, a lot of the harm that endometriosis does can be avoided.  If the endometriosis has damaged the fallopian tubes, then IVF will also help.  Since the eggs do not have to travel through the tubes with IVF, it can improve pregnancy rates and lower the risks of tubal pregnancies.  After a successful pregnancy and hopefully a period of breast-feeding the baby, going on medical treatment like birth control pills can prevent more endometriosis from growing.

As a woman ages, endometriosis tends to become less and less of a problem.  In the menopause and the few years before menopause, hormone levels decrease enough that endometriosis can't grow as well as it used to grow.  Prior to that, the goal is to keep the patient out of pain.  This is a chronic illness, and something one will have to deal with until menopause.  Realistically, treatment for moderate or severe endometriosis usually involves surgery, medications for several years until the pain comes back again, and then surgery again followed by more medication.  In very severe cases, hysterectomy (removing the uterus and ovaries) is performed once the patient is done with child-bearing.  Mild cases can often be managed just with medications.

 If you are suffering from endometriosis, talk to your doctor.  Gynecologists and Reproductive Endocrinologists are trained to diagnose and treat endometriosis.  You should not need to suffer.  There are so many treatment options out there, there is one for you!