Women with Endometriosis will, at some point likely find themselves having to make the decision whether or not to have a hysterectomy, including whether the ovaries should be removed. Endometriosis is a common problem that affects more than 11% of women in their reproductive years, and can be a difficult problem to treat. Endometriosis, otherwise known as Endo, gets its name from the endometrium (lining of the uterus). This disease happens when the lining of the uterus grows on the outside of the uterus where it doesn’t belong. It can be small microscopic implants that attach themselves to areas such as the Ovaries, Fallopian Tubes, Bladder, Bowel, and the outside of the Uterus. Rarely, these implants can attach themselves to the lungs, sinuses, or skin. Since Endo tends to be microscopic, it can be quite difficult to diagnose and treat. There are no standards for the treatment of Endometriosis, so women are often left hopping from doctor to doctor to try to find a treatment for it. Doctors will often recommend a hysterectomy with an oophorectomy (removal of the ovaries), however, it is well known that a hysterectomy is NOT a cure for Endo.
Symptoms of Endometriosis can vary from woman to woman, where some women feel excruciating pain, while others notice none at all. It is a very individual disease in how it presents its symptoms and women can have any combination of the following:
This is the most commonly reported symptom; however, women share that the pain can come in many forms. Some will have very painful cramps during their menstrual cycle. Chronic back and abdomen discomfort, pain with intercourse, or pain during bowel movements and emptying the bladder are common complaints women will share.
Many women with Endo report that their periods have some type of irregular bleeding. Sometimes there is spotting or bleeding in between cycles, or the bleeding can be heavy and prolonged.
Stomach Digestive Problems:
Endo can affect the entire digestive system, and bloating, diarrhea, and constipation are usually a stereotypical symptom. The digestive symptoms that Endo causes can increase in intensity during menstrual cycles.
Because the entire reproductive system is involved, women with Endometriosis can find themselves struggling with their fertility and the ability to get pregnant. There is no one specific reason that explains why Endo might cause infertility but the scientific community has speculated that the immune system might be involved. Endo can also affect the health of the uterine lining and possibly block certain areas of the reproductive system.
There is no pinpointed cause for Endometriosis. Some scientific studies have shown there can be many reasons for Endometriosis, but no one knows for sure what causes it. Some common explanations are:
Retrograde Menstrual Flow: When the menstrual flow sheds in the wrong direction in the body it can end up in places it wasn’t meant to be.
Immune System Issues: Diseases involving the Immune System are common in women with Endometriosis.
Hormones: Women with Endometriosis often have an imbalance of hormones. Estrogen is usually the dominant hormone, and Progesterone can be lacking, creating Estrogen Dominance.
Genetics: Endometriosis tends to run in families.
Surgery: Some theories state that abdominal surgeries can unintentionally move microscopic implants by mistake, causing a growth in endometrial implants in different areas.
Endometriosis can be a difficult thing to diagnose. Women will usually seek out help for 10 years or more before getting an official diagnosis. Endo is not usually seen on any sort of imaging studies (MRI, CAT scan, X-rays) and doctors will usually diagnose Endo based on symptoms and their severity. An official diagnosis is only ever given after a surgery. Sometimes a surgery for a different issue can expose Endometriosis, and sometimes doctors will perform an exploratory surgery for women who have had long-term complaints related to their menstrual cycles. Endometriosis is diagnosed in four stages;
Stage 1 (Minimal): Endometriosis implants are often mistaken for ovarian cysts or small, flat patches are seen on the pelvic area. These implants can cause the formation of internal scar tissue, called adhesions, that can flex and pull on other organs.
Stage 2 (Mild): Most women are diagnosed with this stage, and all of the findings in Stage 1 are present, as well as black spots. These black spots are more aggressive and can attach themselves to organs and adhesions. There is usually an increase in inflammation, which can cause significant pain.
Stage 3 (Moderate): Moderate Endometriosis has Stage 1 and 2 symptoms, as well as the addition of “chocolate cysts” (Endometriomas). Chocolate Cysts are cysts that appear on the ovaries and have a brown color. This brown coloring is due to blood that has become trapped, and if these cysts rupture it can cause severe pain, infection, and inflammation. This, in turn, can end up causing more adhesions.
Stage 4 (Severe): In addition to all the symptoms in the previous stages, in Stage 4, the body has produced large amounts of cysts and adhesions. Some of the cysts can get as large as grapefruits. Stage 4 can also involve adhesions to the rectum. Infertility and severe pain are usually likely with this stage.
Because there is no specific known cause for Endometriosis, the treatments can vary, and tend to be hit or miss. There is no known cure for Endometriosis, but medications like birth control pills, or intrauterine devices (IUDs) are commonly tried. Complementary and alternative medicine can offer some relief as well. These include therapies like acupuncture, herbs, supplements, chiropractic care or massage. Women who can’t get relief for severe symptoms will usually be recommended for surgery. If surgery is needed, it is recommended to find an Endometriosis Specialist who can resect the endometrial implants one by one instead of burning or lasering them off. Endo specialists can be hard to find, so we recommend visiting the Endometriosis Association online for resources.
Surgical Menopause and Endometriosis:
Many women will find themselves facing a hysterectomy for Endometriosis and the common question “Should I leave my ovaries?” usually is asked. We caution women to not remove their ovaries unless absolutely necessary. Some doctors will take the position that ovaries are not needed if you are done having children. But it has been proven that women who remove their ovaries face a new problem of balancing their hormones properly. Some women with lower stages of Endo still have healthy ovaries, and leaving them can help balance the hormones. Women with high stages of Endometriosis usually will be advised to have their ovaries removed in order to stop the Endo growth and cysts. This will put a woman into Surgical Menopause.
Balancing hormones when having an Endometriosis diagnosis can have some significant differences than just standard HRT dosing. Many doctors recommend that a woman go without estrogen for about 3 months post-op to give any leftover endometrial implants a chance to die. Endo grows when it is fed estrogen, so having an estrogen deficient environment can help those left-over cells die off. Once that time period has passed, women can usually start with Hormone Replacement Therapy. HRT in women with Endometriosis usually calls for Progesterone in addition to Estrogen. Estrogen unopposed by Progesterone can let endometrial implants grow back. The goal is to keep the endo at bay while replacing the lost hormones, and this frequently means living with a more Progesterone-heavy hormone regimen. We recommend that you work with a Specialist in Endometriosis and Hormone Replacement.