What people who haven't been diagnosed with Endo should know

by Brooke Sutton
(Paris, TN)

Hi ladies. I have been diagnosed with a misunderstood diagnosis called endometriosis. I have been diagnosed for 6 years and have had a hard time with finding doctors who are much help because of lack of education on this issue.

I went through four surgeries to remove Endo, one to tie tubes, a cyst removed, and ovary removed. I suffer with horrific pain that doesn't necessarily come every month but when it does it is unbearable. Severe pain is never normal.

My mother, sister, my aunts have all had the issue and all aunts have had hysterectomies. I have had to quit working. Nothing helps my pain. Meds make the bleeding worse so I have to avoid any ibprophen or aleve. I also have severe anxiety. The only medication that calms the pain is an anxiety medication which calms the contracting like cramps.

I have had two kids. I get throbbing, burning pain and can not get off the couch some days. I have pain in pelvic area that radiates through the back to where I can't walk or get rest some nights. I've lost weight and have become anaemic on several occasions.

I do not recommend the lupron Depot shot for this issue. It causes bone density issues which led to me losing teeth at a young age. The list goes on. Endometriosis differs in every woman. Some women have no symptoms at all. I pass blood clots, have excessive bleeding. I hope this helps some of you.

I first noticed that I had a problem after bleeding for six months straight and had every doctor saying it was normal and so was the pain, nausea, vomiting not only during periods, but all month long which led to severe depression. I have digestive issues. I have blood clots. My periods are more like a question mark. I never know what they'll be like.

My fiance is very understanding and I thank God every day for that. I wish I had my old life back, and I know there is no cure however the treatment(s) I have received haven't helped at all.

Common signs and symptoms of endometriosis may include:

-Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before your period and extend several days into your period. You may also have lower back and abdominal pain.
-Pain with intercourse. Pain during or after sex is common with endometriosis.
-Pain with bowel movements or urination. You're most likely to experience these symptoms during your period.
-Excessive bleeding. You may experience occasional heavy periods (menorrhagia) or bleeding between periods (menometrorrhagia).
-Infertility. Endometriosis is first diagnosed in some women who are seeking treatment for infertility.

Other symptoms. You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods. The severity of your pain isn't necessarily a reliable indicator of the extent of the condition. Some women with mild endometriosis have intense pain, while others with advanced endometriosis may have little pain or even no pain at all.

Endometriosis is sometimes mistaken for other conditions that can cause pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. It may be confused with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhea, constipation and abdominal cramping. IBS can accompany endometriosis, which can complicate the diagnosis.

When to see a doctor:

See your doctor if you have signs and symptoms that may indicate endometriosis.

Endometriosis can be a challenging condition to manage. An early diagnosis, a multidisciplinary medical team and an understanding of your diagnosis may result in better management of your symptoms.

Causes:

Although the exact cause of endometriosis is not certain, possible explanations include:

-Retrograde menstruation. In retrograde menstruation, menstrual blood containing endometrial cells flows back through the fallopian tubes and into the pelvic cavity instead of out of the body. These displaced endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
-Transformation of peritoneal cells. In what's known as the "induction theory," experts propose that hormones or immune factors promote transformation of peritoneal cells — cells that line the inner side of your abdomen — into endometrial cells.
-Embryonic cell transformation. Hormones such as estrogen may transform embryonic cells — cells in the earliest stages of development — into endometrial cell implants during puberty.
-Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.
-Endometrial cells transport. The blood vessels or tissue fluid (lymphatic) system may transport endometrial cells to other parts of the body.
-Immune system disorder. It's possible that a problem with the immune system may make the body unable to recognize and destroy endometrial tissue that's growing outside the uterus.

Risk factors:

Several factors place you at greater risk of developing endometriosis, such as:

-Never giving birth
-Starting your period at an early age
-Going through menopause at an older age
-Short menstrual cycles — for instance, less than 27 days
-Having higher levels of estrogen in your body or a greater lifetime exposure to estrogen your body produces
-Low body mass index
-Alcohol consumption
-One or more relatives (mother, aunt or sister) with endometriosis
-Any medical condition that prevents the normal passage of menstrual flow out of the body
-Uterine abnormalities
-Endometriosis usually develops several years after the onset of menstruation (menarche). Signs and symptoms of endometriosis end temporarily with pregnancy and end permanently with menopause, unless you're taking estrogen.

Complications:

-Illustration of egg being fertilized and implanting in the uterus
-Fertilization and implantation
-Infertility

The main complication of endometriosis is impaired fertility. Approximately one-third to one-half of women with endometriosis have difficulty getting pregnant.

For pregnancy to occur, an egg must be released from an ovary, travel through the neighboring fallopian tube, become fertilized by a sperm cell and attach itself to the uterine wall to begin development. Endometriosis may obstruct the tube and keep the egg and sperm from uniting. But the condition also seems to affect fertility in less-direct ways, such as damage to the sperm or egg.

Even so, many women with mild to moderate endometriosis can still conceive and carry a pregnancy to term. Doctors sometimes advise women with endometriosis not to delay having children because the condition may worsen with time.

Ovarian cancer:

Ovarian cancer does occur at higher than expected rates in women with endometriosis. But the overall lifetime risk of ovarian cancer is low to begin with. Some studies suggest that endometriosis increases that risk, but it's still relatively low. Although rare, another type of cancer — endometriosis-associated adenocarcinoma — can develop later in life in women who have had endometriosis