Endometriosis: A Challenge for Many Women

For some of us, pain during our monthly cycle is common and we’ve been told it is “normal.” What many don’t realize is this pain may be an indication of a disease, endometriosis.

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
• fatigue

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!

Pursuing Fertility: Options for Achieving Pregnancy

Having children is something many of us see as a natural part of our lives. For one in eight couples, primary infertility will become a roadblock to this goal; and some couples will discover, after having one child, they face secondary infertility.

There are also many women who want children in their lives, but wait until later in life –and the biological clock is beginning to sound off in the background.

Everyday, technology is making progress with ways to overcome infertility and preserve a woman’s ability to have a biological child later in life.

Discovering the path to parenthood can be a long journey that will wind through new technology designed to assist in the baby pursuit.

Maximize fertility
For most couples, infertility will not be diagnosed until after they have tried for at least a year to achieve a pregnancy. Women older than 35, however, should consider taking the next step if conception has not occurred within 6 months.
Sometimes it can be a simple matter of the “timing” being off. There are many over-the-counter products to use when trying to determine when ovulation will happen. These products test for specific hormones indicating ovulation is about to occur and can be very accurate. If, though, after a year conception has not occurred or there have been multiple miscarriages, it may be time to seek a professional’s help.

Specialists
In the book “The Baby Solution,” Dr. Daniel Kenigsberg (with Lauren Hartmean) suggests starting treatment with a gynecologist can be a good initial step. He wrote, “There are some instances when you may want to start care with your ob-gyn, particularly if you are under 37, your insurance does not cover reproductive endocrinologist visits, or there is no reproductive endocrinologist in your area.”

A board-certified ob-gyn is a doctor who has completed four years of college as well as medical school. In addition they have taken a four-year residency in ob/gyn, and then passed their written and oral exams. While infertility is not their speciality, the subject is covered during their training. After Shelly had a miscarriage, her gynecologist suggested running some tests to see if there was a hormone imbalance to possibly cause the miscarriage. Shelly felt comfortable with her doctor and said, “I already had a working relationship with this doctor and had confidence in his abilities.”

Board-certified reproductive endocrinologists are doctors who have not only completed the training to become an ob-gyn, but they complete an additional two to three year fellowship in reproductive endocrinology, pass a written test, then do a two year practice, and then pass a three hour oral exam. Doctors who choose not to do the oral exam are considered board eligible in reproductive endocrinology. Martha and her husband saw a gynecologist for a year, and then began researching their options. “We liked our gynecologist,” Martha said, “but, we still weren’t pregnant and felt it was time to move on. We decided that we wanted to see someone who specialized in infertility.”

Fertility clinics are another option; you’ll find both gynecologists and/or reproductive endocrinologists. These clinics generally have a lab to run tests and most procedures can be done at the clinic. Karen and her husband decided to go to a fertility clinic: “At the fertility clinic we could get all of the treatment options in one place. The whole focus is on obtaining a pregnancy. We felt this was where we would have the best chance to get pregnant,” Karen said.

Specialists for men
Men need to be checked out, too. Most men will initially see a urologist. If there seems to be a problem, a urologist with a sub-specialty of andrology will be consulted as a specialist in the field of male infertility.

Initial female work-up
The first step in trying to discover why conception has not occurred is to see how the entire cycle is working. Tests are done to evaluate the woman’s ovulation cycle including taking a medical history, a physical exam and blood tests. A test to determine a woman’s level of fertility will also be done.

This blood test involves looking at FSH and estradiol levels on the third day of the menstrual cycle. Tests will also be conducted to see how the uterus is responding to hormones and preparing for possible conception. This second half of the cycle is referred to as the luteal phase, and a progesterone blood test will be conducted, along with an endometrial biopsy, which involves taking a sample of the uterine lining. These tests will show if the uterus is ready for conception.

There will be more invasive tests to determine if there are any abnormalities within the female reproductive organs.

These can be caused by endometriosis, scar tissue or fibroids.

These tests include:

• A hysterosalpingogram. This is a test where dye is run through the uterus and fallopian tubes and then x-rays are done. The doctor reads the x-rays looking for any abnormalities that may be causing trouble in conceiving.
• A hysteroscope. This test is conducted by inserting a small tube with a telescope through the cervix and into the uterus. It is used to look for any abnormalities, including fibroids, endometriosis and scar tissue.
• A laparoscopy. This is sometimes combined with a hysteroscope, and it is considered surgery. A telescopic lens is inserted into tiny incisions in the abdomen. It is done to look for physical problems impeding conception.

Before having surgery or even beginning the testing, it may be a good idea to educate yourself in regards to what will happen. Resolve, a national nonprofit organization committed to helping people who are dealing with infertility, has chapters across the country and their Web site contains many educational tools to assist couples facing the infertility challenge.

Initial infertility treatment
If there are no issues with blocked fallopian tubes, the use of fertility drugs may be recommended to induce ovulation. This may be done in conjunction with inter-uterine inseminations to maximize conception possibility. Shelly discovered she had a luteal phase problem and a fertility drug was recommended to help her overall ovulation. “I was able to get pregnant the second month on the medication,” — and had a healthy baby girl.”

Advanced reproductive techniques
When the initial use of fertility drugs and inseminations hasn’t worked, the next step is a group of advanced techniques for conception. These include in vitro fertilization (IVF), gamete intra-fallopian transfer (GIFT) and intra-cytoplasmic sperm injection (ICSI).

These technologies also use fertility drugs to stimulate the ovaries to produce many follicles, which contain eggs. Dr. Kenigsberg explains the retrieval process this way, “Under sterile conditions, a needle will be put through your vaginal wall into your ovary to aspirate (draw up) follicular fluid. The follicular fluid will be removed and inspected under a microscope to identify the oocytes (eggs).”

With IVF, the eggs will be placed in a petri dish and sperm will be introduced for conception to occur. With ICSI, the sperm will be injected into the egg. This can assist in conception when a man has a low sperm count or problems with sperm mobility. The fertilized eggs are incubated for several more days, and then transferred into the women’s uterus by using a catheter. In GIFT, the eggs and sperm are placed together in the fallopian tubes, where fertilization can then take place. In order to return the eggs and sperm to the fallopian tubes, a laparoscopy needs to be performed.

During this process, some people discover a problem with the quality of eggs, sperm or even the embryos. With today’s technology this can be overcome by using donor eggs, sperm and embryos. Surrogacy is also another option if a woman is unable to carry a baby. In addition, during these advanced procedures, there are often more embryos created than can be transferred. The remaining embryos can be “frozen” and transferred in subsequent procedures.

Karen was thrilled to know if the initial procedure did not work, they would then be able to do another cycle with the frozen embryos. “We felt it gave us more of an opportunity to achieve a pregnancy. We were lucky that we got pregnant during our first procedure. Two years later we used our frozen embryos and got pregnant again.”

These procedures are costly, and many insurance companies won’t pay for them. Some couples decide in advance how many of these treatments they can afford before they begin treatment.

Martha and her husband decided three IVF treatments were the maximum they could emotionally and financially afford. “We knew that after 3 tries we needed to close this chapter and move forward to other options,” Martha said.

Options to preserve fertility
For women seeking ways to keep the door open to having a biological child later in life, technology is coming up to speed. One option is to “freeze” embryos. Women looking at this option, will go through the process of IVF and use a sperm donor. The embryos can then be “frozen” and transferred back to the woman when she is ready for motherhood.
Women now have the option to “freeze” their eggs. With this choice, the women will use fertility drugs to stimulate the follicles and produce multiple eggs. The eggs will be removed, like in IVF, but, instead of creating embryos, the eggs will be “frozen.” This procedure allows the woman to delay pregnancy and the choice of a sperm donor to a later point in their lives.

Either choice allows a woman to preserve the ability to have a biological at a later time in their lives. There are women now having children when they are in their fifties by using donor eggs.

Adoption is another path to parenthood, and for many this is the right choice. Martha and her husband adopted; “We have two wonderful children, and know this was how it was meant to be for us,” she said.

Technology is moving fast, affording infertile couples more choices with which to create their families.

Living with an Autoimmune Disease

Picture yourself in a room full of your vibrant women friends and family members. Next, have your group count off from one to five. Every fifth gal needs to step away from the group. How many females in your circle of friends and family are now standing off to the side?

This is a visual of how many women’s lives will be affected by an autoimmune disease — one in five. Seventy-five percent of all cases of autoimmune diseases are diagnosed in women.

So, chances are very good that you or someone you know will fall into this category. With these diseases being so prevalent, it is important to take charge of your health. Chronic pain and fatigue can be signs that something is not working right.

What is an autoimmune disease?
Currently, there are 80 identified autoimmune diseases, and as with any disease, early intervention can make all the difference. An easy to understand and step-by-step description is found in the book, “The Autoimmune Connection,” by Rita Barron-Faust and Jill P.Buyon, M.D. The authors explain it this way, “Simply put, somewhere along the line, your immune cells got the wrong message. Your body dispatched the battalions of cells that normally recognize and eliminate foreign invaders such as bacteria to instead destroy healthy tissue. The attack can target any area, including the joints (causing rheumatoid arthritis), the thyroid gland (causing it to become overactive or underactive) or nerve cells (leading to multiple sclerosis).”

Our immune systems, which are designed to protect us, have now become our enemies and we’re left wondering why?

What causes the immune system to break down?
That is the question scientists are trying to answer. It is widely believed that genes play a part in predisposing a person to an autoimmune disease. But, just having the gene doesn’t seem to be the only factor involved in developing these diseases. Researchers believe that it is probably a combination of genes and other triggers that cause the body to react and begin attacking itself. Since women in childbearing age are most often affected, some of those triggers could be hormones or pregnancy. Environmental factors, stress and viruses are also being looked at as contributing to these diseases.

Right now there are no concrete answers as to what chain of events cause these diseases to manifest.
Symptoms
For many patients, the onset of an autoimmune disease feels similar to having the flu. There is a feeling of fatigue or malaise; inflammation in the joints is common along with dizziness. From there, the symptoms vary according to the disease.

“Carol” was diagnosed with Rheumatoid Arthritis, a disorder that causes the immune system to attack the joints, resulting in immobility due to pain, twenty-years ago. She can still remember the beginning stages: “I was so tired. I felt like I was coming down with something, but never got sick; I just felt so run-down.” She said at first she was told it was probably pre-menopause. But when her elbows began to hurt, she knew something was really wrong.

“Debbie” discovered she had Psoriatic Arthritis, inflammation of the joints, when she was 38 years old. “I was having trouble sleeping,” she said. Any position was painful.” Anything Debbie did to try to get comfortable didn’t provide relief. “One day at work, I remember the date, November 17, 1998, I had a stabbing pain in my knee and couldn’t walk,” she explained. “My co-workers helped me to my car. When I got home my husband had to help me in the house. I had no idea what was wrong with me.”

In addition, many autoimmune diseases share similar symptoms, according to the U.S. Department of Health and Human Services (womenshealth.gov).

Getting a proper diagnosis
It can take a combination of tests and seeing specialists that are familiar with these unusual symptoms and diseases to ensure a proper diagnosis. Doctors that specialize in fields that diagnose autoimmune diseases include those who are a rheumatologist, endocrinologist, gastroenterologist, dermatologist, hematologist, nephrologists and neurologist.

So, for many it isn’t surprising that their condition isn’t immediately recognized. In the book, “Women and Autoimmune Disease,” by Robert G. Lahita, M.D., Ph.D., the author states that autoimmune diseases “are among the most poorly understood and recognized illnesses.” He further explains that, “The main reason autoimmune diseases are so difficult to diagnose is that there are no definitive diagnostic laboratory tests.”

There can also be periods of times when the disease is not as active. Patients then believe that they “just had a virus.” Then, another flare up will happen and the patient is back in a cycle of pain, fatigue and confusion. And, many people will go several years before even talking to a physician about their symptoms.

After switching doctors and explaining her symptoms, Carol’s doctor suggested a blood work-up and visiting a rheumatologist. Once diagnosed, she was relieved. “After two years I finally had a name for what was wrong with me,” she said. “It wasn’t just my imagination.”

Debbie realized she needed immediate help and said, “When I called my doctor, he knew something was really wrong with me — I am not a complainer. When I went to see him, he did a blood workup and referred me to a specialist.” But to her dismay, the new doctor made her feel it was in her head. “He never did any tests, he just put me on steroids.” But through her persistence, she went back to her primary doctor and got the name of another specialist. “This new doctor was amazing,” she said. “I had a bunch of tests and finally found out what was going on.”

Treatment
There are no cures for autoimmune diseases. The battle is to keep the pain and symptoms under control and to prevent the disease from further destroying healthy tissues, joints or organs. These diseases can be life threatening if not treated. Many times it can take months to find the right drug protocol for a patient. There are side effects with many of the medicines used, and patients have to be aware of those risks, too.

Carol began taking a rheumatoid arthritis medicine and was thrilled to discover she could once again strap on her favorite high heels without pain. But there were side effects. “I was feeling great for about three months and then I broke out in this horrible rash,” she said. “Another medication I took worked for five years, then I developed cataracts and needed to stop taking it.” During the next few years she tried a variety of drugs that worked for a small duration of time. Eventually the pain returned, but thankfully she found a drug protocol that has worked well for the last three years.

Debbie has also tried different medications, looking for that successful combination. She explained, “I started using a medication that seemed to be working well. Then after six years, I developed high blood pressure, and they discovered I had nodules on my lungs.” She had a lung biopsy and it was determined that she needed to change medications. After trial and error, she said she is now on what she calls “miracle juice,” which is working for now, but she said she is “already anticipating the next step.”

Additionally, people with autoimmune diseases are at an increased risk for developing additional autoimmune diseases. It’s important to be aware of changes in symptoms and communicate with the doctor.
The emotional toll
Not only are these diseases devastating on a body, they also take their toll on the emotional life of the patient. Discovering you have a long-term illness, which can not only leave you disabled, but also perhaps end your life, can be an overwhelming prospect.

Carol had dealt with her disease for more than 10 years before she talked to her doctor about her mental wellbeing. “I just felt I couldn’t cope anymore. I kept changing medications, they all had such extreme side effects, and I was in pain and stressed out. I know my disease was getting worse because of the stress I felt. My doctor prescribed an anti-depressant. This has helped me feel more balanced.”

Debbie found that it was her husband who couldn’t cope. “When we discovered what I had and that it was a chronic condition, my husband said that he couldn’t be tied down with a sick wife and 3 kids.” Debbie’s husband left her. But in the end, Debbie found this was for the best: “My children and I have become very close. They understand that I have some bad days and help me physically, and support me.”

Day-to-day life
Once on the proper course of treatment, most people realize their lives have to change. For most, it takes time to discover what in their daily lives has now become an obstacle and how to work around it.

Carol found that she could no longer work, but doesn’t let it keep her from living. “At 63, I feel I’m doing okay. I tell my husband that we need to get out there and do something physical to ‘oil our joints’ and stay in shape,” she said.

Debbie also found she needed to keep living her life. “I wanted to be all I could be. My doctor told me, “You need to be all you can be, but accept you can’t be — who you were.” Debbie enjoys gardening and being outdoors but has cut back on the hiking and biking.

When stricken with an autoimmune disease, it’s important to learn your limits while still pursuing your dreams. But always keep track of how you feel and trust your instincts.

Helpful Web sites: aarda.org (American Autoimmune Related Diseases Association) and womenshealth.gov