About 8 months after being diagnosed with PCOS, as if having one debilitating disease wasn't enough, I was diagnosed with yet another disease. One just as common in infertile women as PCOS, but not as simple to diagnose. Endometriosis. I was not as surprised about having this condition, because my doctor had mentioned it to me a year earlier that he suspected I had it, but in order to diagnose it, I would have to go under the knife.
In July of 2008, I had what's called operative laparoscopy. A surgical procedure where they sliced me open in 3 places; my naval, right lower abdomen and left lower abdomen where they could insert their instruments and take pictures of my insides to diagnose me, then burn out any endometriosis they found. During the surgery, my doctor made certain that other things were in order as well, such as running a dye through my fallopian tubes to make sure there were no blockages, and checking the size and condition of my ovaries. Aside from having to remove endometriosis scaring from one of my fallopian tubes and ovary, he later informed me that my reproductive organs were in great shape, and with a little help I could easily become pregnant and carry to term.
But surgery wasn't easy. That was the first time I had ever had surgery where I was actually "put under" with anesthesia. The week after surgery was the most painful experience of my life. I couldn't get up out of bed without help, and just being in an upright position caused me to feel overwhelmingly nauseous. Anything that caused me to use my abdominal muscles (news flash: this is everything) caused outrageous pain. My friend came over and stayed with me during the day so I wouldn't be alone when my husband was at work, and helped me get up out of bed when I needed to. She brought me smoothies and soup. All the things a good friend does. But she's not a very touchy-feely person, so it was rather hilarious when she said one day when I wanted to get up, "Aw, man, does this mean we have to hug again?" Honestly, I about died laughing--because laughing was incredibly painful to do. I used to joke that she was the worst person to take care of me because she made me laugh all the time. But, really, I was so glad she was there. Thanks Martika!!
So, anyway, what I personally know most about Endometriosis is the pain it causes. I strongly believe it is very closely related to PCOS in that it is a hormonal disorder as well, but that is my own personal opinion. Here are the facts:
What is Endometriosis?
Endometriosis is a life-altering hormone and immune system disease where the endometrial tissue (the tissue that lines the inner cavity of the uterus) grows outside the uterus in other locations. It gets its name from the word, endometrium, the tissue that lines the uterus or womb. Endometriosis affects about 10 -15% of the general population of reproductive age women and is found in 30-40% of all infertility patients.
Most often, endometriosis is found on the:
- Ovaries
- Fallopian tubes
- Tissues that hold the uterus in place
- Outer surface of the uterus
- Lining of the pelvic cavity
Other sites for growths can include the vagina, cervix, vulva, bowel, bladder, or rectum. In rare cases, endometriosis has been found in other parts of the body, such as the lungs, brain, and skin.
What are the symptoms of Endometriosis?
The most common symptom of endometriosis is pain in the lower abdomen or pelvis, or the lower back, mainly during menstrual periods. The amount of pain a woman feels does not depend on how much endometriosis she has. Some women have no pain, even though their disease affects large areas. Other women with endometriosis have severe pain even though they have only a few small growths (which is my case). Symptoms of endometriosis can include:
- Very painful menstrual cramps; pain may get worse over time
- Chronic pain in the lower back and pelvis
- Pain during or after sex
- Intestinal pain
- Painful bowel movements or painful urination during menstrual periods
- Spotting or bleeding between menstrual periods
- Infertility or not being able to get pregnant
- Fatigue
- Diarrhea, constipation, bloating, or nausea, especially during menstrual periods
In addition, many women with endometriosis suffer from:
- Allergies
- Chemical sensitivities
- Frequent yeast infections
The pain of endometriosis can interfere with your life. Studies show that women with endometriosis often skip school, work, and social events. This health problem can also get in the way of relationships with your partner, friends, children, and co-workers.
The only way to diagnose endometriosis is to do a laparoscopy. Endometriosis may appear as dark implants (blood-filled nodules) or bands of scar tissue that bind the tubes and ovaries to the intestine or to other structures in the pelvis.
Why does endometriosis occur?
Growths of endometriosis are benign (not cancerous). But they still can cause many problems. To see why, it helps to understand a woman's menstrual cycle. Every month, hormones cause the lining of a woman's uterus to build up with tissue and blood vessels. If a woman does not get pregnant, the uterus sheds this tissue and blood. It comes out of the body as her menstrual period.
Patches of endometriosis also respond to the hormones produced during the menstrual cycle. With the passage of time, the growths of endometriosis may expand by adding extra tissue and blood. The symptoms of endometriosis often get worse.
No one knows for sure what causes this disease (again, I have my suspicions), but experts have a number of theories:
- Since endometriosis runs in families, it may be carried in the genes, or some families have traits that make them more likely to get it.
- Endometrial tissue may move from the uterus to other body parts through the blood system or lympth system.
- If a woman has a faulty immune system it will fail to find and destroy endometrial tissue growing outside of the uterus. Recent research shows that immune system disorders and certain cancers are more common in women with endometriosis.
- The hormone estrogen appears to promote the growth of endometriosis. So, some research is looking at whether it is a disease of the endocrine system, the body’s system of glands, hormones, and other secretions.
- Endometrial tissue has been found in abdominal scars and might have been moved there by mistake during a surgery.
- Small amounts of tissue from when a woman was an embryo might later become endometriosis.
- New research shows a link between dioxin exposure and getting endometriosis. Dioxin is a toxic chemical from the making of pesticides and the burning of wastes. More research is needed to find out whether man-made chemicals cause endometriosis.
- Endometrial tissue may back up into the abdomen through the fallopian tubes during a woman’s monthly period. This transplanted tissue could grow outside of the uterus. However, most experts agree that this theory does not entirely explain why endometriosis develops.
Why does endometriosis cause infertility?
Tissue and blood that is shed into the body can cause inflammation, scar tissue, and pain. As endometrial tissue grows, it can cover or grow into the ovaries and block the fallopian tubes. Trapped blood in the ovaries can form cysts, or closed sacs. It also can cause inflammation and cause the body to form scar tissue and adhesions, tissue that sometimes binds organs together. This scar tissue may cause pelvic pain and make it hard for women to get pregnant. If scar tissue causes the end of the tube to be stuck to the ovary or the intestines, it will not be able to pick up the egg cell. If these implants grow on the surface of the ovary and form cysts, these cysts can grow in size and are often as big as an orange. Unfortunately when these blood-filled cysts rupture, they can release great amounts of blood in the immediate vicinity and cause even further scarring and pain. (These rupturing cysts are what I learned most likely caused my years of sudden debilitating pains that caused me to fall on the floor in agony for several minutes at a time).
The best time to try to conceive is immediately after surgery because the tubes have been flushed out and are open and hopefully the tubes and ovaries will remain in normal location. If a patient tries to conceive on their own for several months after surgery for endometriosis (which is what we did) – the options at that point are either to proceed with IVF or repeat the laparoscopy and see whether the implants or scar tissue has returned. In most cases, IVF will be the better choice.
How is Endometriosis treated?
There is no cure for endometriosis, but there are many treatments for the pain and infertility that it causes. The treatment options for any case of endometriosis are either surgical or hormonal.
The surgical treatment is to use either laser or electrocautery (burn) to vaporize the implants or larger lesions. (Which is what I had done). If a surgeon has the skill required, these implants can also be removed by using tiny cutting instruments (small scissors) through the laparoscope.
Hysterectomy is a surgery in which the doctor removes the uterus. Removing the ovaries as well can help ensure that endometriosis will not return. This is done when the endometriosis has severely damaged these organs. A woman cannot get pregnant after this surgery, so it should only be considered as a last resort.
Hormonal options that treat endometriosis have the sole purpose of reducing the implants. Hormone therapy is beneficial by reducing the amount of estrogen and progesterone. The birth control pill is able to accomplish this and can therefore can be used to treat this disorder. One can also use Lupron because Lupron will suppress FSH and LH – and therefore there will be no stimulation of the follicle to produce estrogen and progesterone. The advantage of adding hormonal therapy after surgery has been done is to hopefully reduce the likelihood of recurrence of the endometriosis.
Complementary treatment options may include:
- Traditional Chinese medicine
- Nutritional approaches
- Homeopathy
- Allergy management
- Immune therapy
There are no definite "natural" ways to lower your chances of developing endometriosis (so they say). Yet, since the hormone estrogen is involved in thickening the lining of the uterus during the menstrual cycle, you can try to lower levels of estrogen in your body. To keep lower estrogen levels in your body, you can:
- Exercise regularly
- Keep a low amount of body fat
- Avoid large amounts of alcohol and drinks with caffeine
I plan to continue my treatment for Endometriosis in the same way as I am dealing with PCOS. Medication when necessary, and a healthy lifestyle. I am counting on erasing both these diseases from my life. As was recommended by my doctor, IVF is our option to become pregnant, and according to him, pregnancy is the best "cure" for endometriosis.
Information in this post gathered from several different online sources as well as my own personal experience and doctors.