Endometriosis affects at least one in every 10 women in North America, and this number is considered a conservative one. Endometriosis is very painful and as a result women find they adjust their lives because of the pain.
In the book, “Endometriosis for Dummies,” by Joseph W. Krotec, M.D. and Sharon Perkins, R.N., the authors state, “Seventy-eight percent of women with endometriosis missed an average of five days per month from work due to endometriosis.” They also found “thirty-six percent said endometriosis had affected their job performance.” In addition to the pain, forty percent of women with endometriosis also have trouble conceiving.
This disease impacts a woman’s day-to-day life, and those diagnosed know the difficulties this disease brings.
What is endometriosis?
According to www.endometriosis.org: “Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body.”
During a normal cycle, the uterine lining goes through changes within the month. When getting ready for the menstrual cycle, the tissue becomes thicker and then sheds off during menstruation. When a woman has endometriosis, pieces of uterine tissue become stuck to the surrounding organs. This tissue contains glands still responding to a woman’s hormones; this means it also becomes thick and then sheds off during menstruation, but there is no where for the blood to go.
As a result, the trapped blood causes inflammation, which can turn into cysts and then become scar tissue. This scar tissue can occur on many places inside the pelvic cavity and these adhesions can become stuck together, pulling the organs and making the pelvic region deformed. It can also affect how organs function and cause problems with the bladder, intestines, urinary tract and, in very rare cases, has even been found in the brain.
What causes the endometrial lining to go astray?
This is a question researchers are trying to answer. There are several theories, but none have been proven. One of the oldest ideas was presented in the 1920s by John Sampson, M.D. He suggested that instead of the endometrial lining flushing out during the menstrual cycle, some of it goes the “wrong way,” called retrograde menstruation. This wandering lining then attaches to organs and areas within the pelvic cavity (as noted above). Although this theory has been around for decades, there has been no solid evidence to support it; and it also raises questions as to why this happens to some women and not all.
There is also research into a genetic link to endometriosis. It does appear to run in families, and scientists are looking into a genetic component involved in endometriosis. Other possible explanations include endometriosis being caused by an autoimmune disorder; environmental factors influencing this disease; and there is also research into the fact that cells may change into endometrial cells. Again, none of these theories have been proven, and research is ongoing.
Symptoms of endometriosis
Pelvic pain is the most common symptom associated with endometriosis. Although there doesn’t seem to be a correlation between the intensity of pain and the amount of endometriosis found.
“Kim” doesn’t remember having really painful periods, just some cramping, until after she had a miscarriage. Kim explained, “I had been on birth control pills and didn’t have any problems. We decided we wanted a baby and got pregnant the second month of trying. I had a miscarriage and after that is when my periods started being so painful.”
www.endometriosis.org lists these additional symptoms as possible signs of the disease:
Pain may be felt:
- before/during/after menstruation
- during ovulation
- in the bowel during menstruation
- when passing urine
- during or after sexual intercourse
- in the lower back region
Other symptoms may include:
- diarrhea or constipation (in particular in connection with menstruation)
- abdominal bloating (again, in connection with menstruation)
- heavy or irregular bleeding
In the book “Endometriosis for Dummies,” it is suggested a woman keeps a diary to track her symptoms: “Keeping records in a diary is important to help your doctor make a diagnosis and develop a treatment plan for you. Diaries are practical for recording symptoms as well as all other important pieces of information because they provide dates and can cover a 12-month time period. The only way to see a trend in your symptoms is to record them for several months in a row.”
What is involved in a diagnosis
So you’ve kept a diary and there does seem to be a pattern in the pain and symptoms, what is the next step? Many women begin their journey by seeing the family doctor or gynecologist to have a consultation and review the pattern of their symptoms. If endometriosis is suspected, it may be an important step to find a doctor familiar with this disease and how to treat it. Endometriosis.org lists some thoughtful tips for women when they are seeking a specialist for this disease or www.resolve.org is another organization to assist with additional information about endometriosis.
Sometimes doctors will request additional tests to try and get a picture of what is happening. An MRI, a CT scan, an ultrasound and even X-rays are tools a doctor may use to take a peek inside the pelvic region.
However, none of these tests are considered conclusive when trying to diagnose endometriosis. The only accurate way to determine if endometriosis is present is to have a diagnostic laparoscopy performed.
A laparoscope is a 30-centimeter long telescope-like instrument inserted into the pelvic cavity via a small cut near the navel. With a light and a lens, the pelvic cavity is magnified to determine if endometriosis is present.
Kim had a diagnostic laparoscopy and said, “My doctor was unable to perform my laparoscopy so another surgeon stepped in. He said he was shocked at how severe my case of endometriosis was. I had adhesions everywhere and cysts on my ovaries.”
Endometriosis is discovered — now what?
If, during the diagnostic laparoscopy, endometriosis is found, some doctors will then remove the adhesions. A surgeon may use a laser, scissors or other tools to remove the adhesions. Sometimes the damage is so severe that a second surgery is recommended.
Kim needed to have a laparotomy performed in order to remove all the adhesions and cysts. A laparotomy consists of a much larger incision than what is used in a laparoscopy. The incision can be made horizontally or vertically, and is usually two inches long but can be up to twelve inches long. A laparotomy allows a surgeon to have room to make any repairs needed in the pelvic region and more accessibility to adhesions and scar tissue that has developed.
Unfortunately, some women need to have repeat surgeries as the adhesions return and more damage is done. Kim has had to have three laparotomies. She noted, “I had to have my fallopian tubes removed, my appendix removed and now my colon is fused to the back of my uterus.”
Another option used to control the symptoms of endometriosis is medication. In their book, Krotec and Perkins explain, “Without the normal hormonal stimulation to the endometrial tissue, the endometrium doesn’t bleed off, which means that endometriosis tissue doesn’t bleed either.” Many of these medications suppress hormones, and as a result the endometriosis has nothing to stimulate it so it doesn’t spread and the pain is also decreased.
Sometimes doctors will surgically remove adhesions and then recommend a course of treatment with medications to keep the endometriosis at bay. For some women, they discover they have endometriosis during the course of an infertility workup. For these women, the drug protocol is not an option as they are trying to achieve a pregnancy.
Since pain is one of the biggest issues with endometriosis, physicians work with patients to find ways to control the pain through medications. Some women look into alternative medicines to help them and find relief from the chronic pain.
Through medication and surgeries a woman may have years where she has relief from pain and symptoms. For most women, though, the pain returns and they are once again fighting endometriosis.
Can a hysterectomy be the solution?
Some women choose to have a hysterectomy hoping with the removal of the uterus, the endometrial tissue will no longer be a problem. This is a huge decision and should be made after much research and consideration. For some, this can be the answer, while others find they still struggle with endometriosis. Why some women still have the disease after a hysterectomy is another of the unanswered questions researchers are looking at; this is why the theory proposing some cells change into endometrial cells is still being considered.
For Kim a hysterectomy at this time isn’t an option, “My doctor has said she would like for me to have one, but knows I’m trying to get pregnant.” Kim and her husband used IVF and have a 19-month-old daughter and they are currently trying to have a second child.
Endometriosis and menopause
For women with endometriosis, menopause can bring relief. Since endometriosis responds to hormones, and during menopause the hormone production ends, women discover they are finally free of pain.
If a woman chooses, however, to use hormone replacement therapy she may once again be plagued by symptoms of endometriosis.
Women with endometriosis live with intense pain caused by a mysterious disease many don’t understand. If you know someone with this disease, take a moment to listen to her and be a supportive friend!